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Newly Diagnosed Son Advice Please

youngmum3nz

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youngmum3nz Newbie
youngmum3nz
Posted

hi all, my names kate im 21, live in New Zealand and am a single mum of three kids aged 3 1/2 2 1/2 and 7 weeks my middle son has recieved his blood tests back as very high and were of to a paediatrician when the referal goes thru. I have no real idea where to start and i dont know anyone going thru this that i can talk to. Also being single i have no one to vent to when i get worried or stressed over this. Also my youngest has just been dx with lactose intolerance and excema (how you spell that escapes me right now!!) along with some reflux which makes me think hell more than likely go down the same track. Because of the lactose intolerance were trying to restart our breastfeeding which i hadnt done since he was 8-9 days old but im not sure what ill should leave out of my diet? Does anyone have older children without celiacs, do they follow the gluten free diet to? I hope this makes sense as my head has stopped spinning since i found out. Hope someone more experienced has some advice. Thanks very much

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flagbabyds Collaborator
flagbabyds
Posted

I'm 15 and have been on the diet since I was 20 months old. I completely follw the diet.

Welcome to the board, it has a lot of good resources, I will allow other people to post more because I have to go to sleep now, school tomorrow.

Guest nini
Guest nini
Posted

Welcome to the board... my daughter has had symptoms since birth, I wasn't dx'ed until she was 3 and then she was dx'ed several months after me. IF you are going to want to get all your children tested for this, do not start the undiagnosed ones on the diet yet until you get them tested. IF you are comfortable with self dx'ing based on your middle child having this, then you can try the diet for all of them, kids adapt to it much easier than we give them credit for and in my personal opinion, how they respond to the diet is way more important than the results of any blood test or biopsy. Those tests can only rule it in, but if they are negative that does NOT rule it out because the tests aren't as accurate in small children (not that accurate in adults either) too many false negatives. No such thing as a false positive though, so if they get a positive blood test for it, they def. have it.

Just my two cents!

TCA Contributor
TCA
Posted

I'm proud of you for starting back the breast feeding. A lot of moms wouldn't do that, so it shows your dedication. I am currently pumping for my 1 year old (today) and she's doing MUCH better. I had to go on a gluten free diet for her and it improved her health dramatically. She too had a dairy intolerance, eczema, and sever reflux. After being gluten-free for a while, she can now tolerate dairy again. After going on the diet, I now realize that I probably have it too. I don't have the GI symptoms, but the joint pain and a rash that is probably DH. As far as eating, I started out just eating fruit, veggies, meat and cheese. I don't know about what brands to recommend in New Zealand, though.

Testing for kids under 5 is very unreliable. My son (now 3) had inconclusive blood work and 2 negative biopsies, but his response to the diet was miraculous.

I really feel for you as a single mom. My dad was a single parent had soooo many health issues to deal with. I'll be thinking of you.

Feel free to PM me if you want to vent or talk. I usually sit at the computer while I pump, so I check in a few times a day.

Good Luck! :)

mommida Enthusiast
mommida
Posted

We are here for you to vent to.

My oldest son's test came back negative. He was eating gluten free for about 2 weeks, because I was just trying to get the basics of the diet down and everything in the kitchen checked. He ate 2 small chocolate chip cookies and his belly bloated out so badly. I thought back and the constipation and rash he had battled cleared up while he was on a gluten free diet. His stomach hurt so bad, he has never willingly ate gluten again. He was about 4 at the time and he is almost 7 now.

L.

youngmum3nz Newbie
youngmum3nz
Posted
  • Author

hi everyone, thanks so much for all your thoughts and suggestions. its nice to know im not the only one going thru this. I think i will get my daughter and myself tested before we start on the diet, (i dont think my oldest has it) as itd be alot easier not to have to do a gluten challenge down the track as im guessing the diet will be alot easier if they dont know what their missing. We have an appointment with a peadiatrician when the referall goes thru so im going to ask to be refered to a dietician too as to where to start, although im learning alot from the internet and reading the ingredients of foods. It amazing to see how my son will choose something without gluten over something with it. I bought rice wafers before our results came thru and he wouldve eaten the whole packet on the spot if id let him ( he usually eats enough to feed a small bird!) Anyway i know this is going to be a big learning curve but i also know of people who are at the other end of that curve and see the light in the tunnel. In away im glad that now my son will grow properly and be happy, (ive always called him my teenage girl with pms hes been so moody) So thanks again for all your help, ill be around here alot as the information on here is proving to be invaluble

tiffjake Enthusiast
tiffjake
Posted

I don't have kids and I don't have too much advice to give you....but I do want to say HI! Welcome to the board youngmom3nz! You are welcome to vent here anytime, I do! And the people here are great and "listen" or read and post. People DO care!!! I wish you health! God Bless, Tiff

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taweavmo3 Enthusiast
taweavmo3
Posted

Welcome to the board! Come vent here anytime, I can't imagine doing all this as a single mother. It does sound like your youngest is heading down the same road, that's just how my Ben was. He tested negative, but his eczema and lactose intolerance is completely gone now that he's gluten free. He ate a gluten cracker two weeks ago, and sure enough, a nice big eczema patch popped up. So, he'll stay gluten free even without the positive test results. I'm gluten free too now, and have strong reactions if I eat gluten. I used some lotion a few days ago with oatmeal (doh!) and my hands were immediately itching, burning and bright red.

So, getting the test done is great to rule in celiac, but as in our case and many others, it definately doesn't give you the whole picture. My husband laughs at me b/c I think everyone would be better off w/out gluten at all, lol, I'm the gluten nazi. But hey, I don't think that's too far off the mark.

Welcome again! This is a great site with a ton of info. I would not have adapted so quickly without all these wonderful people. Hope to see you around often and feel free to ask anything!

youngmum3nz Newbie
youngmum3nz
Posted
  • Author

Thanks Tamara

Im kind of glad we have alittle bit of time in between the test results and the paediatrician app. as its giving me a chance to learn what he can and cant eat, (as i dont want to make mistakes after hes off the gluten as the reactions seem to be stronger when theyre not having it all the time) and also to gain an aresonal of information to show my family friends kindy school ect that he is not to have anything with ANY gluten in it. Im going to be a gluten nazi too!! ha ha. Ive made a big folder with all the kids having seperate files so all there informations in one place so if someone losses something i have copies on hand ect (also so no one can tell me this is all in my head.) But there are some things i was wondering if anyone knows the answers too id really appreciate it.

I got a copy of Michaels test results for the celiac panel and one of the levels was very high has anyone had one as high as this does it mean anything inparticular?

Anti-gliadin IgA 24 units, Anti-gliadin IgG 52 units, Endomysial Ab POSITIVE, anti TTG IgA 204 units (the last one worries me with all three's normal range 0-20)

Also whats the go with playdough, paint/art supplies ect? I had no idea they had gluten and i didnt even think theyd be a problem? how do you know which ones do and which ones dont?

Finally i took my 3yr old to get a test done with me before going gluten free she has no symptoms but i thought checking now would be better than going on a gluten challenge when her brother cant eat it but she completely lost the plot so we gave up. what age do you think i should take her back? its not a huge deal as im sure shes fine but yeah any advice would be great.

Thanks everyone for making this so much easier for me, weve had a very stressful few weeks and you just cant ask a 2 or 3 year old to give you adult conversation!! lol

b&kmom Newbie
b&kmom
Posted
hi all, my names kate im 21, live in New Zealand and am a single mum of three kids aged 3 1/2 2 1/2 and 7 weeks my middle son has recieved his blood tests back as very high and were of to a paediatrician when the referal goes thru. I have no real idea where to start and i dont know anyone going thru this that i can talk to. Also being single i have no one to vent to when i get worried or stressed over this. Also my youngest has just been dx with lactose intolerance and excema (how you spell that escapes me right now!!) along with some reflux which makes me think hell more than likely go down the same track. Because of the lactose intolerance were trying to restart our breastfeeding which i hadnt done since he was 8-9 days old but im not sure what ill should leave out of my diet? Does anyone have older children without celiacs, do they follow the gluten free diet to? I hope this makes sense as my head has stopped spinning since i found out. Hope someone more experienced has some advice. Thanks very much
b&kmom Newbie
b&kmom
Posted
hi all, my names kate im 21, live in New Zealand and am a single mum of three kids aged 3 1/2 2 1/2 and 7 weeks my middle son has recieved his blood tests back as very high and were of to a paediatrician when the referal goes thru. I have no real idea where to start and i dont know anyone going thru this that i can talk to. Also being single i have no one to vent to when i get worried or stressed over this. Also my youngest has just been dx with lactose intolerance and excema (how you spell that escapes me right now!!) along with some reflux which makes me think hell more than likely go down the same track. Because of the lactose intolerance were trying to restart our breastfeeding which i hadnt done since he was 8-9 days old but im not sure what ill should leave out of my diet? Does anyone have older children without celiacs, do they follow the gluten free diet to? I hope this makes sense as my head has stopped spinning since i found out. Hope someone more experienced has some advice. Thanks very much

Hi There,

Hang in there I felt so bad when my son was diagnosed, I couldn't help but blame myself. Thankfully there are so many resources available, and products. I really like the "Gluten Free Pantry" which you can find on-line and lot's others that have great products. It may take some adjustment, but it is so worth it to stay gluten free, for your sons health. Best of luck

Shannon

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    • Dr. Gunn
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      By Dr. Gunn · Posted

      Exactly! Negative genetics can rule out celiac disease with close to 100% certainty. It takes tTg antibody testing and biopsy confirm the diagnosis in a genetically susceptible individual. 
    • trents
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      By trents · Posted

      What Dr. Gunn states is essentially true. It is a rule out measure. But be aware that to possess either of the two primary genes that have been identified with celiac disease (or both) doesn't necessarily mean that you have or will develop celiac disease. Almost 40% of the general population carries one or both but only about 1% of the general population will develop active celiac disease. It remains latent until triggered by some stress event which may or may not occur. So, there is a genetic component to celiac disease but there is also an epigenetic component. 
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      Have you had celiac genetic risk testing? A celiac genetic test is accurate with or without gluten in your diet. If you don't carry the celiac risk genes you can effectively rule out celiac disease for life. 
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      Based on those results alone, it’s not possible to say you have celiac disease. The test that is usually most specific for celiac, tTG-IgA, is negative in your results, and the endomysial antibody (EMA) is also negative, which generally argues against active celiac disease. However, your deamidated gliadin IgA is elevated, and your total IgA level is also high, which can sometimes affect how the other antibody tests behave. Another important factor is that you were reducing gluten before the test, which can lower antibody levels and make the results less reliable. Because of that, many doctors recommend a gluten challenge (eating gluten regularly for several weeks) before repeating blood tests or considering an endoscopy if symptoms and labs raise concern. It would be best to review these results with a gastroenterologist, who can interpret them in context and decide whether further testing is needed.
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