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carriej82

Member Since 28 Feb 2012
Offline Last Active Mar 22 2012 07:59 PM
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Posts I've Made

In Topic: Vegetarian, Gluten-Free And Dairy-Free - Can It Be Done?

11 March 2012 - 06:44 PM

Thank you all for your encouragement and suggestions. What kinds of rices do you all cook with? I am only familiar with white, brown and wild.

In Topic: Is A Celiac Reflexive Panel Adequate?

10 March 2012 - 08:41 PM

Hmmm, your testing results do look thoroughly negative, sorry to say, Yes, that is the full panel except for the anti-gliadin which is falling into disuse anyway. So for 17 (approx) out of 60 days you were gluten free and you were gluten lite in fall and gluten free for 3-4 days at a time during that period. It is hard to say if that would have affected your results, but really, your scores were not even close even though you did not give the ranges the lab used. And your total serum IgA is solidly mid-range. It is certainly possible for you to be non-celiac gluten intolerant. If you could have one of your children tested who has been eating gluten all along that would be a useful validation of whether celiac is involved or if you are all non-celiac gluten intolerant. There is evidence showing that NCGI is also genetically based, same as celiac. Maybe the wee fellow you were recently talking about could be tested.

But it certainly sounds to me like your whole family needs to be eating gluten free with the symptoms they are showing (excluding your husband, of course, but to make it easy on you you should cook entirely gluten free at home and let him get his gluten fixes outside the house, otherwise you run the risk of cross-contamination and it will be too much work for you.!!)



I am hoping my husband will get tested! He actually has more of the classic celiac symptoms than I do... fatigue (he takes 5 to 6 hour naps during the day after a full night sleep) achy legs, tingly hands and feet, chronic D and multiple trips to restroom all day long, stomach aches, nausea, depression, low testosterone, hot flashes. He does complain about his health and has been in search for answers but his answers must be in the form of a pill, so far he is not very willing to consider food a likely cause of so much suffering.. especially a food so common as wheat. He eats fast food everyday (by choice, I offer to pack a healthy lunch) so I think really is kind of afraid of the possibility of something like Celiac being a reality for him. We've had some conversations and he is back and forth between not wanting to hear it and then being more softened toward the idea of just getting a quick blood draw. So we'll see... if his bloodwork were positive and I know I am intolerant my kids' symptoms might make even more sense!!


Thanks mushroom for your input! I am finding it so hard to stay away from these forums as I am new to this and with everything I read more questions pop into my mind. It is wonderful to be able to glean so much from others' experience and knowledge who have traveled this road for a longer time.

In Topic: Is A Celiac Reflexive Panel Adequate?

10 March 2012 - 08:20 PM

As I mentioned on your new thread, (I went back to your profile and checked out your other posts) the full celiac panel consists of the following tests:

Anti-Gliadin (AGA) IgA
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA

This is apparently what the comprehensive celiac panel from LabCorps would offer. The reason for doing all the tests is that it is possible to be positive on some and negative on others. You only need to be positive on one to be celiac. The total serum IgA test is a control to make sure that the person being tested produces a normal quantity of IgA; if not, any IgA testing is invalid and they have to perform the IgG versions of the tests. The Ani-Gliadin tests are the older tests; the newest test and the one that seems to work best for children and be most specific for celiac is the DGP. If I am reading your post correctly, then the reflexive panel that Regional Lab is offering would first run the total serum IgA, and if that was in the low range, then they would run the IgG versions of the tTG and DGP. If the total serum IgA was normal, they would run the IgA versions of both the tTG and DGP. I would think that that would probably be a pretty good deal since those are the two tests most often used now. How much would they charge you for that?



Hmmm... I am trying really hard to follow this. :) All the different measurements really confuse me as to what they are. I need to do some serious reading on the IgA, IgG, tTg stuff so I can wrap my brain around it. I started this particular thread over a week ago when I was trying to decide the best way to afford testing with a ridiculously high-deductible. I did end up hauling my kids to the hospital Regional Lab location to try for the reflexive test. They had told me over the phone I would qualify for the uninsured price of $100 for the test, but turns out since I do have insurance they could not offer me that after all. I ended up walking away and looking into INeedLabs again, which is what I ultimately went with. They charged me $160 for a celiac panel through Labcorps.

According to my results page (I tried to copy and paste but won't let me) I was tested for the following levels:

Deamidated Gliadin Abs, IgA - 3
Deamidated Gliadin Abs, IgG - 3
tTg IgA <1
tTg IgG 2
Endomysial Anitobody Iga, Negative
Immunoglobulin,A, Qn, Serum 186

Is that the full panel? All were in the very low end of negative ranges. I had only been totally gluten-free for 3 or 4 days at a time last fall, and then 10 days in early January, and for 1 week in February. Otherwise was gluten-lite in fall and gluten heavy this year except for above mentioned periods.

Any thoughts? I take this to be non-celiac gluten sensitivity or intolerance (or whatever, is there a difference in sens or int?) I wonder if I should have my kids tested for celiac though before starting them on gluten-free diets to see if their behavioral issues improve

In Topic: Anger, Quick Temper, Depression

10 March 2012 - 07:45 PM

That is a remarkable description, Carrie, of feeling like being underwater with no idea how to surface, drowning with no source of oxygen.... No wonder you were not "yourself". So glad that you accidentally discovered the source of your problems. I assume that it helped your son immeasurably too :) since it is pretty apparent that gluten does pass through the breastmilk. How is he doing now? Do any of your other chldren have problems?



Mushroom, yes! Thank you. My son's skin does clear up dramatically when I manage to keep all dairy, gluten, and nut-derived products out of his diet. Unfortunately, he gets fed things by his older siblings quite often and even a small amount of one of his allergic foods will cause him to explode from head to toe in a very uncomfortable rash. It is just too bad that my favorite gluten free flour has both almond meal and buttermilk in it, which he can't tolerate, so back to the drawing board on finding a yummy gluten-free flour that does not taste like cardboard. :)

My other children do have issues that I now strongly suspect may be due to gluten. 3 year old son has had night terrors for years, angry/aggressive outbursts, difficulty controlling his bladder and elimination even though he's been potty training for months now and is almost 4 years old.

5 year old daughter has had belly aches and constipation since infancy, very fussy, vomits randomly for no reason with no accompanying symptoms, incredibly sensitive/cries all the time with an attitude of the-world-is-ending-I-want-to-die (since when do 5 year olds want to die?!), and the biggest thing is her irrational fears. They are crazy, she is petrified of everything from being alone, the dark, dogs, costumes of any kind, food ... she often cries at the table because she will look at her food and tell me there is something bad or yucky in it. She is also very thin, brittle hair (not like mine or my husband's which is thick & healthy, I always wondered about a vitamin deficiency) and dark circles under her eyes. I see in her a lot of my gluten-induced personality traits, which I also see in my mother who never was tested for celiac but now has hashimoto's disease. Also have a grandmother and great-grandmother with mental/pschizophrenia disorders so it seems this gluten intolerance is a genetic thing that is more evident in the females in our family.

In Topic: Anger, Quick Temper, Depression

10 March 2012 - 06:40 PM

So glad to have found this thread also!! I feel like I want to hug you all right now. I can add my voice to all of yours that this is a real phenomenon!! I have suffered with depression, anxiety, pendulum like mood swings, suicide idealization, social anxiety, irrational fears, negative voices, obsessive thoughts, explosive anger, chronic fatigue, feeling "drugged" and the like since 12 years old, now almost 30. Oh yea, and bulimia. I always thought I was just a severely dysfunctional and mentally unstable individual, thus leading to very low self esteem. Never understood what was so wrong with me that I could not function like everyone else, or even just feel okay and content for any period of time. I had a great family, parents, and nothing really wrong with my life - no abuse, no dark secrets. Plus pre-12 I was a very happy child, athletic, outgoing, in gifted programs. Made no sense when after puberty I did a complete 180 behavior and personality wise. Mom took me to all kinds of docs and therapists who threw around words like Bi-Polar, ADD, Depression. Deep down I knew I wasn't truly crazy though, or angry, or anything. I just kind of felt like there was another influence over me I couldn't put my finger on. Kind of always felt like I was drowning, just living underwater with no source of oxygen and no idea how to surface.

By God's grace I later found a man who could see past my emotional issues, got married, had 3 children. As a blessing in disguise, my 3rd son was born with severe eczema. Last fall I was researching online what some mothers did to get rid of their child's eczema. Some had success with a dairy and gluten free diet. So I did that for my son, and since I was nursing, I joined him on the diet. I knew nothing about gluten-intolerance or celiac before this. I was looking only for a reaction in my son's skin, but was completely unprepared for the reaction in myself... after 5 days on the diet I woke up feeling clear-headed, energetic, content, and just calm quiet in my chest where there had always been such a storm of worry and turmoil and confusion. It was amazing, and man from that point forward it has been the greatest blessing to discover I am not crazy, it was the gluten all the time. Since then I have not gone completely gluten-free because I wanted to get the blood test and knew I had to still be eating gluten, and I could not afford the test right away. But I would go maybe 1 week gluten-free, then a month off, then a week on. Every time I've been gluten-free all those symptoms have "magically disappeared' just into thin air, as some of you also said. gluten-free I feel totally 100% normal and able to function. Finally had the blood test last week for celiac - results all negative but I know what I have experienced and will now be gluten-free for life if needs be, as long as I see results I will do whatever it takes not to regress back into that psychological prison.