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Discussion Starter · #1 ·
Hi all,

I'm not sure if anybody remembers reading about the nightmare we just went through with ds's allergies. If not, you can read about it here

Anyways, he's basically over the hump of it now and is recovering, but last week at the allergist, she said she's fairly sure he has celiac's. Because is body is still flared up, and fairly senstive to anything right now, we can't do the testing for another two weeks. Then we should know for sure.

I'd never thought about that before, but now that I'm reading about it, he does fit the symptoms.

Sighh...OT, but my kids are sorta falling apart right now.

So, what has everyone's experience been with this disease. Honestly, it seems like a real PITA, but the most important thing is getting him healthy.
 

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I am a mom of a celiac!!

She is 4, we have been gluten, dairy, soy and dairy free for almost two years. (tho we cut out dairy 6 weeks after she was born). It was a rollercoaster and we are finally getting the hang of it.

It does suck to have to be so vigilant and cook EVERYTHING from scratch but the changes in her behavior and growth make it all worthwile.

Keep your chin up! The best is yet to come, i promise.
 

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The doctor failed to tell me that my ds2 needed to be eating a HIGH GLUTEN diet for the blood test to come back positive. I called to tell her that he had never eated a high gluten diet so I didn't expect a positive result, she didn't believe me until the test came back negative. Also, he really should have had the entire panel of 6 test done instead of the 1 the first time around, we had to take our ds2 back for round #2 and he was not happy.

Be sure they do the following and if they aren't find a doctor who will --

Anti-gliadin IgA antibody
Anti-gliadin IgG antibody
Anti-Endomysial IgA antibody
Human Tissue Transglutaminase IgA
Total Serum IgA
HLA DQ2/ DQ8 -- genetics require for CD

At the moment 2 labs in the country are doing these test with a standard doctors feel is reputable
Prometheus in CA and MAYO

DS2 has Positive IgG and DQ2 plus a number of metabolic test results that indicate malabsorbtion and malnutrition. You should probably request those too so it's only 1 needle stick.

The biopsy is the gold standard of a firm diagnosis of CD, again the child must be on a HIGH GLUTEN diet, which my son never has been. We will not be doing the biopsy b/c we can not at this time put him on a gluten challenge. He needs to be healthy and needs to understand why we want him to eat 'wheats' after telling him not to eat gluten 'wheats'.

A really great forum for discussion, learning and links is
http://brain.hastypastry.net/forums/...play.php?f=141
I got this from a fellow MDC member a few months back and I am so happy to pass it along to others.

Please feel free to ask questions. I had many and I have many more. My ds2 is on a GF diet and is without diarhea and his behavior is noticable better. He is on an appetite stimulant now that is helping him eat so he isn't having sugar highs and lows that affect his behavior. I didn't know such a thing existed until I went to a local Celiac Support group and there was just 1 other mother there. There is also ROCk with is for kids, but nothing close to my home.

This yahoo group has lots of posted files of GF foods and information.
http://health.groups.yahoo.com/group/SillyYaks/
The woman who opened this site also runs the Northern VA ROCK group. I wish I had found her immediately, but I did find her and the information posted is fabulous!!!
 

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Discussion Starter · #7 ·
Thanks for asking


His initial blood test came back saying that he didn't have it -but we all know those are fairly unreliable. However, his allergy skin test showed that he was allergic to wheat, rice, barley, pretty much all grains, corn and potato along with all shellfish and a bunch of other stuff.
So for now we are just treating him as if he is a celiac -(my guess is that if we did the genetic test it would show he did have it).

Honestly, though all of this has been overshadowed a bit. He's had some serious autoimmune issues since June and we've pretty much been dealing with that.

IgA levels are good. His IgE (allergy related) levels on the other hand are at like, 250 when they are supposed to be at or around a ten.

Anyway, can I ask a question here? What is this EE I have seen mentioned in this forum? We still haven't figured out a clear diagnosis on my son's autoimmune stuff (we think he might have had rhuematic fever, but aren't completely sure because of the asswad docs who first saw him).
 

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I have serious autoimmune issues as well. After being undiagnosed for so long, I guess it's to be expected. My liver is inflamed and dumping enzymes and I have a ton of bacteria in my bloodstream. It's amazing...I was symptomatic for 12 YEARS before my diagnosis...and even then I was only diagnosed after my dd. Yeah for the medical community
: Thanks for the links. I can't wait to check them out.
 

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Resources ---
http://brain.hastypastry.net/forums/...play.php?f=141
Some GF files, lots of discussions -- usually get a reply to a question. A huge knowledge base on dxing as well.
http://health.groups.yahoo.com/group/SillyYaks/
Lots of Files, food brands that are GF etc. I still haven't even see them all!!! It is a fast moving message board and sometimes my messages get no reply.

Those are my favorites. There are soooo many out there that I had to narrow it down to what I needed and who had it. If I'm searching for a recipe or something specific I go all over the internet to compare etc. But for basics, I found it easier to navigate two sites rather than 5 to 10 to 25 etc.
 

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Discussion Starter · #13 ·
I like this website www.glutenfreepantry.com. I'm a total doltz in the kitchen and this place really simplifies things for me. You can just order the mixes right there, and they even do bulk orders AND have a free downloadable recipe book.

I think there is also a newsletter that you can subscribe to Food Allergy Resouce Network or something --our immunologist was telling me about it...
 
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