Robbie Update

[robbiesmom]

Hi Everyone! Just wanted you to know that my Son had his biopsy and did well. The doctor found some damage in his esophogus so he took biopsies of that, his stomach and small intestine.He may have acid reflux rather than asthma or in addition to it-he only has the coughing when he lies down. Except for throwing up twice afterwards he recovered well-the most pain was from the blood draws and iv sites. We should know in a week what the results are. I already found out my blood test is negative but I am still going to change my diet for the most part-could be just wheat sensitivity. I'll let you all know the results for Robbie when we hear!

[tarnalberry]

I'm glad to hear he came through it well! I hope the week passes quickly, and the results are good.

[robbiesmom]

We received the results a couple of days ago-the biopsies of the small intestine showed negative! They took four samples none of which had damage. The doctor seems pretty sure this means he doesn't have celiac-he did say that he definitely has a wheat & gluten allergy due to the blood test being positive and to keep him on the diet-at least if we have an oops it won't damage his system except to make him sick for a couple days-I hope-How can I be sure that this is not Celiac? We were supposed to have a gene test done but they did not take enough blood for all the tests that were ordered so they will need to get more if we want to do the gene test after all-I think I want to but the idea of torturing my child with another blood draw makes me cringe! If they had taken enough in the first place, while he was still sleeping it would have been great-now I need to know more about this test before going ahead with it.

His esophogus came back with mild acid reflux-will the diet help this? Also, the stomach was normal.

[Guest nini]

this is what irritates me about Dr.s the blood test was positive. Just because the biopsy didn't show any damage it doesn't mean that he wouldn't get damage if he continued on gluten. From what I have read, children are too young to have intestinal damage to the extent that it would show in a biopsy. Even after years of being celiac a lot of adults can have very little damage if any, to their intestines. This is why the GI community is moving away from the biopsy as gold standard. The blood tests are becoming more specific so they pick up Celiac well before damage has a chance to occur, which hello, is a good thing, right???

I'll get off my soapbox...

[robbiesmom]

Thanks for the input. So do you think we need to do the gene testing? He has responded well on the gluten-free diet so I am going to continue with it-I am just trying to see if we can relieve some of the anxiety with cross contamination issues-I would love to be able to just order a hotdog without the bun or fries that are maybe cooked in the same oil as breaded items if possible. But I won't if I can confirm the Celiac disease is present. His initial test was igg at 128.5, but I have been told this is not the best test. I am am so frustrated! I have 5 days left of work-then I get to take control over more of Robbie's life so it can be less hurried and stable. He had his 3rd b-day party today and it went well! everyone ate the gluten-free pizza and cake with no issues-some even said they thought it was very good!

[Guest Lucy]

That is wonderful!!!!!!! I am so happy for you. I think that if try to follow a no wheat diet (because it is entirely possible to only be allergic to wheat and not have celiac disease) you will be fine. If in a year, you want to see what a blood draw shows (earlier than that if symptoms persist), then do it then. No use putting him thru it.

I think that if the biopsy showed no damage, you do not have to worry. I am no expert, but he may just have a wheat allergy and not celiac. I wish all the best for you.

[tarnalberry]

That's great he hasn't shown damage yet (from a health perspective, if not a "getting a diagnosis" perspective ;-) ). If you still want to do the gene test, why not just order it the next time he has a regular blood draw? There's no need to do it in a hurry, since his genes won't change! ;-)

[Guest nini]

isn't there a company that does the gene testing without blood? Don't they use a swab from the inside of the cheek???

[robbiesmom]

Thank you all so much! I don't think any of us could get through this without such great support! I am crying right now because I am finally relieved that we have "figured this out". I have been so worried and preoccupied. My marriage has been somewhat strained as I am always researching on the computer and I just haven't cared about me lately-I'm up late all the time and always tired, but I can't seem to go to bed early enough-it is time I get on a diet and exercise program and take care of me! I have to lose 60 lbs.-anybody have some things I can add to my diet to jump my metabolism? I need the energy to get going!

Again thanks for everything!

I hope I can use mynew found knowledge to help others!

[Rachel--24]

isn't there a company that does the gene testing without blood? Don't they use a swab from the inside of the cheek???

<{POST_SNAPBACK}>

Enterolab does gene testing with a cheek swab. That was how I got tested. Very easy to do...If you want gene testing for your child w/out the blood draw this would be the way to go. It's $149 for the gene test.

[Merika]

We received the results a couple of days ago-the biopsies of the small intestine showed negative! They took four samples none of which had damage. The doctor seems pretty sure this means he doesn't have celiac-he did say that he definitely has a wheat & gluten allergy due to the blood test being positive and to keep him on the diet-at least if we have an oops it won't damage his system except to make him sick for a couple days-

<{POST_SNAPBACK}>

Groannnnn. If his blood tests were positive, he has celiac. That the biopsy showed no damage just means the doctors found no damage - ie might have missed it or there's no noticeable damage yet in your son (yea!). Wheat and gluten *allergies* will NOT show up in the celiac test. Allergy markers and celiac markers are different and different tests need to be run for each. If he has celiac (and if celiac tests were run that he rated positive on he has it) his system WILL be damaged every time he eats gluten, along with being sick for several days.

The doctor may say no-no, if there's no visible damage, yadda yadda, but from the NUMEROUS ADULTS on this list with serious health problems and ugly quality-of-life issues, I think you have the opportunity to save your son from this - if I had been lucky enough to be diagnosed as a kid, with no *obvious* signs of celiac then, I would have a very different life right now. Looking back, though my "onset" of celiac symtpoms was at age 19, there are hints of it all the way back to toddlerhood, and I'm guessing it's this way for many of us.

Mostly I am deeply puzzled and disturbed by the doc's interpretation of the test results. Did he run the right blood tests?????

Merika

[robbiesmom]

He ran the igg and iga again and it was the igg that was positive. I have a 3 year appointment for Robbie on Thursday and I will run this by her again and look at the numbers and what tests were actually done initially. I thought the igg was just for intolerance rather than actual celiac. I will ask about the cheek swab test for the gene.

[Merika]

He ran the igg and iga again and it was the igg that was positive. I have a 3 year appointment for Robbie on Thursday and I will run this by her again and look at the numbers and what tests were actually done initially. I thought the igg was just for intolerance rather than actual celiac. I will ask about the cheek swab test for the gene.

<{POST_SNAPBACK}>

KaitiUSA on this board is really well informed on what tests are for what. You may want to pm her, as I don't think she reads the "parents of kids..." section, not having any kids herself.

Merika

[KaitiUSA]

The thing I do not like about biopsies are that if they come back positive they can rule it in but if it comes back negative they can't rule it out. There may be no damage yet if it is in beginning stages or there could only be sporadic damage.

Since he has had symptoms and had one of the tests come back high, I would say that there is an issue with gluten going on and could be in the beginning stages of celiac.

A gene test would probably be very good for you to do. Usually without the gene you are 99.9% likely not to get celiac. Enterolabs will test you for celiac genes and gluten intolerance genes. Regular labs usually only test for the main celiac genes.