Literally Unable To Gluten Challenge

[MycasMommy]

I am pretty sure some crazy things are going on in my body.  Its my understanding that I would have to gluten challenge myself in order to be tested for Celiacs.  That is a HUGE problem.  I cannot keep any of the offenders down. My eyes water, my nose runs, and my stomach covers whatever was accidentally ingested with large amounts of mucus until it is ALL vomitted out. I had gastric bypass surgery 2.5 years ago and this has been going on since then. Its not just gluten either.  Its corn and anything with a high gliadin count. Rice is ok sometimes.. and other times it is not. As I look back on my past.. all that time i thought i must have had chronic fatigue.. all the joint pains, the ankle swelling...  On the other hand.. no bowel issues. nada. I do not have any of it now because i cannot keep the gluten/grains  inside of me to start with...

 

so yep.. basically.. i guess there would be no way to ever find out now?

 

 

I am literally forced to keep myself grain free.

 

As for my 17 year old daughter. She is the same as me!  The asthma, the excema, the constant sneezing, the sore joints and "growing pains" she should no longer have, the tiredness/insomnia thing..  Anyway, She has agreed to be tested because she has been eaten gluten at her fathers for the past 2 months... and she eats it with me too, I just dont serve it. She is almost a grown adulkt and buys cookies..haha  oh dear and tries to not let me know   anyway...  I guess I just need to hear that i am not crazy...   I was thinking there was no way it could be celiacs for me because I was vomitting.  I thought ok... just some weird allergy... but all the other things.  Everything I have listed for my daughter is true for me as well.  I dont want her to end up like this.   I cant go out to eat... EVERYTHING is contaminated. I have only puked ONCE in this month (january) because my  new year resolution was to be SO CAREFUL.  Rice flour got me oops. I dont know why it is sometimes ok and sometimes not. The other stuff like wheat and its family and corn always make me violently ill though.

 

Thoughts?  Am I doing this wrong?  gah...

[BlessedMommy]

It does sound like gluten challenging could be a problem for you.

My symptoms are partially neurological, so I have no choice but to remain gluten free because eating gluten for 3 months would most likely kill me. When I attempted to gluten challenge the first time, 10 days of it landed me in the ER.

I should've gotten tested before removing gluten, but between non-classical symptoms, doctor ignorance, and lack of knowledge it didn't happen.

That ship has sailed though and I'm thankful for the symptom resolution and good health I do have. You do not, after all, need a doctor's permission to stay gluten free. I've been gluten free for almost 5 years....

[MycasMommy]

Youre right! That ship sailed ages ago! haha I am gluten free ...and well..grain free basically and I dont need permission.. apparently not even from myself! LOL If I tried the challenge, I would end up in the hospital too.  How many days can a person go without food?  Because I would puke it all and basically slowly starve.  I have been reading through here and lucky I have been keeping close watch on some things in my blood work since I had that surgery. My vitamin D is and has always been a problem. I just had to have my gall bladder out last summer too. hmm... I am just not educated enough about all of this gliadin business except for the fact that I am aware that anything with gliadins is toxic for me through extensive trial and error.

 

I just dont want my kid to go through this. With hindsight, it is BLARINGLY obvious what the problem is for me...and she is mimicing my life.  I guess I am going to be agressive with her physician about it.  We have just moved from Hawaii to Seattle so... its new Doctor time.  I wonder if I should just skip the pediatrician thing as she will be 18 this summer.

[kareng]

A surgery can trigger Celiac. However, I hope you see your surgeon about these problems. Just to make sure there isn't a complication of your surgery that is causing issues. Also, make sure you are eating the way you should for the bypass. Some people don't follow the limits and eating style/ diet that goes with such a drastic digestive change. ( I know one of them! And he never feels well when he doesn't follow the diet plan).

[MycasMommy]

I have taled to my surgeon about it. He is pretty much in agreement that I most likely now have celiac but that trying a gluten challenge would basically be somewhat deadly. There really is nothing to be done for confirmation.  I am also one of the really lucky (or some would think unlucky is they dont want to stay eating properly) people. Its 2.5 years out and I still cant eat anything more than a large egg sized meal.  My pouch isnt stretchy. HAHHA ( i named it voldemort). I fi am 100% determined to eat a meal because I can feel my body desperately wanting calories ( I have lost all my weight), then I will sit down and eat what a normal person would it.. it just takes me 2-3 hours to do so.

 

My surgeon went to some kind of conference here on the mainland with all of his nurses right before all of this became a huge problem for me with the vomitting and gluten/gliadin thing. So they were all fresh off education about this happening after such a surgery.  They did not really educate me a lot about it though. Just to say, yes it probably is, no we cant Dx it because you would get too sick, and keep avoiding all gluten/grain.  That dosnt feel like enough for me. They did not say ANYTHING about my child

siblings etc..

[kareng]

I think your kids will just have to get tested before going gluten free and see? It's always easier to follow the gluten-free diet, and get others to respect it, with a diagnosis. For example, Many colleges won't accomadate gluten-free without a diagnosis.

[nvsmom]

I agree that it is a really good idea to test your kids before going gluten-free, and retesting every few years if they are eating gluten.  

 

Hope you continue to fee better.

[BlessedMommy]

I think that kids definitely do need a diagnosis. I would make sure that you get them tested even if you have to order the tests yourself and self-pay. It's that important.

[MycasMommy]

Hmmm  because she is almost 18 ( I only have 1), I just dont know If I should make her forst appointment with a doctor here in Seattle with a pediatrician or a GP.  Which is more likely to follow her with this do you think?  I am going to be a bit aggressive about testing either way.  The big factor here is that my daughter KNOWS how sick I get but she isnt really up to going gluten free.  She is 17, almost done with her A.S. , and has a job, so she is basically in charge of herself.  She has been visiting her father for a bit and definitely been high on gluten.  Best time for testing her right? When she is with me, life is easier. I cook grain free and just add a side of grains for my SO and her so they do not go hungry.. but it would be easy for her if she has to break her addiction to them.  She plans on living here at home straight through her B.S. but LIFE is out there as she is well aware and I think hearing it from a doctor that gluten is dangerous for her would go a long way.  I see a lot of people really struggle with avoiding gluten. I do not know what that is like because if I "cheat" even just once by accident, the reaction is immediate and volatile. Looking over all of both of our symptoms... I don't know...  I do not want to seem like some  crazy helicopter parent at the doctors. I am going to have to talk to them extensively to explain why I want the testing simply because I, myself, have no way to get an official Dx. Its pretty daunting anyway.

[cyclinglady]

We just go to a regular GP. Gave up my daughter's Ped when she started school. I grew up just going to a family doctor. A GP/PCP can easily order a celiac panel. Just be sure it is complete and education yourself. The University of Chicago's celiac website is a good place to start.

[kareng]

. Looking over all of both of our symptoms... I don't know...  I do not want to seem like some  crazy helicopter parent at the doctors. I am going to have to talk to them extensively to explain why I want the testing simply because I, myself, have no way to get an official Dx. Its pretty daunting anyway.

 

 

Her appointment isn't about diagnosing you.  Just go in with her actual symptoms  for a physical,and ask for the blood work. They (her symptoms) should stand on their own.  Hopefully they will also check her thyroid and for anemia (a symptom of Celiac).  She is still a minor, so it is normal/required that you be there.

[MycasMommy]

Thank you Kareng for that reminder   She is all set with an appointment for Feb. 3 at with a Dr. Wangen here in Seattle.  He is supposed to be the go to guy for this kind of thing in the area. Bonus, its only 4 blocks away! NON bonus is that they make you pay up front and have your insurance reimburse you directly. So its $245 for the appointment, $163 for the panel, $20 for the draw, and add on any other appropriate testing, Worth it but gah... OUCH$$

[kareng]

Thank you Kareng for that reminder   She is all set with an appointment for Feb. 3 at with a Dr. Wagner here in Seattle.  He is supposed to be the go to guy for this kind of thing in the area. Bonus, its only 4 blocks away! NON bonus is that they make you pay up front and have your insurance reimburse you directly. So its $245 for the appointment, $163 for the panel, $20 for the draw, and add on any other appropriate testing, Worth it but gah... OUCH$$

Ohhhhh! A fancy doctor! Lol. We have a few here and people LOVE them! I hope it works well for you.

[ravenwoodglass]

Thank you Kareng for that reminder   She is all set with an appointment for Feb. 3 at with a Dr. Wangen here in Seattle.  He is supposed to be the go to guy for this kind of thing in the area. Bonus, its only 4 blocks away! NON bonus is that they make you pay up front and have your insurance reimburse you directly. So its $245 for the appointment, $163 for the panel, $20 for the draw, and add on any other appropriate testing, Worth it but gah... OUCH$$

If that amount will be a hardship for you if not reimbursed do call your insurance company first before you go to the appointment. You want that money either back or taken off your deductible if possible. Good luck and hope all goes well. 

[MycasMommy]

Yeah, fancy doctor time.  I am sick unto death with her last pediatrician. My poor kid would come home from work and her joints would hurt so much all she could do is hobble around ... when I asked about this the Pediatrician said..it sounds like gout but it cant be so.. meh, he had no answer and just said that its all ok?  WHAT?!?!  She has crazy growing pains too..and should not.  She has asthma (the mucousy kind when exercising), eczema like mad all over her body that bleeds sometimes, she sneezes at least 30 times a day (non exaggeration) .. whatever.. and gah.. I am just sick unto death of it all.  It will be a hardship to cover the cost, and worth it. Worth the fancy doctor. They just load her up on allergy medicine that doesnt work and that we have to constantly keep changing to get even a couple of days of relief. Her periods are so heavy and painful that it is debilitating.(they said iron is a little low..eat more meat and that was the end of it)

She is always tired. who knows why at this point. I keep getting told she is alright. She is NOT alright. I have been watching her eat, carefully watching. I have suggested to her that gluten free may make her feel better, but...being a teenager, this idea seems like mom is just nagging.  She needs to hear it from someone else.

 

I AM going to have the GP order the panels and blood draws and tests though, so that the insurance will cover it, and THEN we will take all of that to the fancy schmancy MD.  The more I read on this site, the more angry I am becoming about what has gone on with both myself and my daughter and NO ONE HELPED!

[1desperateladysaved]

Onward, you can heal from here in all respects.  Now you have hope of something better.  I had 30+ years of symptoms undiagnosed and am healing.  There is hope for you and your family.  If the doctor isn't 100% cooperative now, just let it go and let her watch all that happens with you.  She should never have to suffer the same degree as you did, because she will be forewarned.  I hope for her she will get definitive answers and healing.