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Protein And The Kidney
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hi all, its been awhile,just wanted to leave an update on the protein issue,back in april 2012 protein was found in the urine it was 1.3 grams 24hr.tests were done to rule out other conditions that could cause the issue,all can back fine.so its just a kidney malfunction no biopsy was down becasue the protein went down to 853mg 24hr,and gfr is still high in the 90's.creatine /bun is still good, also nothing is getting worse,i see him every 4 months for blood and urine work to keep things in check taking 40mg of micardis for the blood preasure that seems to help the protein levels.anyone here ever have an issue like this.

thanks kryptonite

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Thanks for the update K! I haven't had kidney issues myself, but it sounds like you are doing better eh? That's good to hear! :)

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Hi Kryptonite,

I'm glad you're on the mend. Did your doctor tell you about the link between Celiac and kidney issues? My 4 year old is in the midst of testing and can't get to the celiac specialist until Nov. 28. On the labs his regular GI sent me I saw low creatine levels and a high BUN ratio but she had written, "looks ok". She's terrible about calls and I was going to discuss with specialist but is it something I should be concerned about? For what it's worth I believe he has celiac, though blood work has not confirmed it. He has strong symptoms and I just tested positive.

Thanks,

Megan

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Hi Kryptonite,

I'm glad you're on the mend. Did your doctor tell you about the link between Celiac and kidney issues? My 4 year old is in the midst of testing and can't get to the celiac specialist until Nov. 28. On the labs his regular GI sent me I saw low creatine levels and a high BUN ratio but she had written, "looks ok". She's terrible about calls and I was going to discuss with specialist but is it something I should be concerned about? For what it's worth I believe he has celiac, though blood work has not confirmed it. He has strong symptoms and I just tested positive.

Thanks,

Megan

yeah doc told me that it could be celiac i also have hypo thyroid also.its a mess lol.you might want to try a kidney doc for those test results.also push for the celiac tests also to confirm. my kid has to be checked also.maybe keep your kid gluten free my kid is gluten free also but is not confirmed yet.

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Thanks for the update K! I haven't had kidney issues myself, but it sounds like you are doing better eh? That's good to hear! :)

yeah rgr that thanks

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    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
    • Despite it being a nightmare, I did wait for my kids to get biopsies. At one point I had one severely ill child gluten-free and two more waiting having to eat it. It was worth the wait though and I think long term a biopsy may be worthwhile, especially for school. I have already had issues with schools and camps so having a firm diagnosis has been helpful. 
    • Knowing that the reaction to gluten in celiacs is an uncalled for immune system reaction, I was thinking of how a cure would be possible. Maybe a medicine that somehow turns off the immune system. The only thing that i've heard do that... HIV.  obviously that's way worse than celiac. Just some food for thought.
    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
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