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Hello all, I am obviously new here. I decided last night to do some research on this topic and was really surprised. I have not been 'officially' diagnosed, but I guess that is just a formality at this point. I guess a history would be helpful:

After the birth of my 2nd (and last) child almost 4 years ago (at age 31), my body basically fell apart. I suffered with chronic diarrhea and severe headaches for almost a year before going to the GI dr. I was using exederin migraine all that time. I had a colonoscopy, which came back normal. He said it was probably IBS. Ok. Exactly one year later (and with continued symptoms), I had 3 gallbladder attacks and ended up with my gallbladder removed. So of course, the diarrhea worsened. But so had the headaches. We ended up going the headache route and had CT scans, MRI, the works. They did find a meningioma (brain tumor), but it was so small and it such an insignificant location, there's no way that was the problem. I realized on my own the aspirin in the exederin was killing my stomach. Switched to excederin tension (no aspirin). Small improvement there. But after one of my worst flare ups, I lost about 10 lbs (over a couple of months). I can eat anything and never gain a pound. I also can't travel, eat out, leave the house within 2 hours of eating, and never ever know when it will hit. Sometimes immediately, sometimes the next day. Sometimes a food was ok, others it was a disaster. That was the confusing part. I could never find the offending food. In June, my GP did some blood work and decided to run a gluten sensitivity test, almost as an afterthought. When I saw him again a month later, he mentioned that it had showed a "weak positive", but that I could test again and it might be negative. Not really concerned. I basically dismissed it too. Then last night I started researching. I did not know that this disease causes damage to the intestines. I thought if the symptoms were tolerable, no need to go gluten-free. Wow, what an eye-opener this board has been. Every symptom I have is on the list provided on another post. I suspect I also have residual bile salts diarrhea from not having a gallbladder, which is complicating things even more. I never know when, and a simple sip of water can trigger it. I suppose I should be retested. I don't know what he ran to show a positive or negative, but I see that there are 4 different blood tests. Can someone tell me exactly what they are? Whatever I request, he will run it. He is extremely cooperative and does his best to help. I just want to be able to tell him exactly what I want done. Any other thought or suggestions would be wonderful too. Thank you! :(

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Hi there!

First, I just wanted to say that I'm sorry for all of the suffering you've been through these past 4 years. No one deserves to spend that much time in misery. Based on your symptoms, it would definitely be logical to suspect Celiac disease. I'm not sure if you have read this yet or not, but it is believed that in genetically susceptible individuals, the onset of Celiac disease can be triggered by pregnancy (I'm not sure exactly why...it may be the stresses that pregnancy places on the body, or hormone fluctuations...in any case, pregnancy is recognized as a common time for celiac disease onset). So your story really is consistant with what is referred to as "classic" Celiac disease.

As far as the tests go, I don't have a medical degree or anything, but I did attend a recent consensus conference at the National Institute of Health aimed at developing a uniform public health policy regarding screening, testing, diagosis, and treatment of Celiac disease. One of the topics covered was the various serological tests used for diagonsis. There were actually 5 blood tests that were mentioned, including:

AGA-IgG (antigliadin antibodies, IgG class)

AGA-IgA (antigliadin antibodies, IgA class)

EMA-IgA (endomysium antibody, IgA class)

TTG-IgA (tissue transglutaminase antibody, IgA class)

ARA (antireticulin antibody, IgA class)

The researcher who presented on the blood tests concluded that the two tests of the five mentioned above with the best sensitivity and specificity are the EMA-IgA and TTG-IgA. So if you are going to tell your doctor which test to perform, the current research indicates that you should pick one of these two. Regardless of which you pick, you should also tell him to check your total IgA levels because 1 in 300-400 people are IgA deficient. In IgA deficient individuals, both of these tests can produce a false negative (since they measure levels of Ig-A class antibodies).

If the bloodwork does come back positive, it is necessary for you to have an endoscopy performed by a GI doctor so that biopsies of your small intestine can be taken to check for abnormalities consistant with celiac disease. The description of the procedure frightened me when I read it, but doctors typically give an anesthetic that induces a "twilight sleep," so I didn't experience anything more than a slight sore throat.

Anyway, I'm on my way out so I've got to wrap up this post now, but I hope this information helped. Feel free to e-mail me if you have any more questions. I wish you the best of luck in your search for the source of your symptoms.

~Wish

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Thank you so much! That is the exact info I needed. I've spent a couple of days now researching the gluten-free diet, just to try and prepare myself for the changes I know will be ahead. I personally have no doubt that this is celiac disease. I vaguely remember my exMIL going through the diarrhea and weight loss for a long time and then finding out that it was celiac disease. Her mother also had it. That has been in the back of my head for a while now. I should have been a little more aggresive investigating it, but like I said-I had no idea the devastation caused by the disease. I thought it was only inconvience. Boy, was I wrong. I'll be calling my dr. Monday to set up one of the sets that you listed. And thank you again!

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Hello again! I'm hoping Wish will find this again, or maybe someone who can tell me what this means. I went today with the list provided by Wish to get more blood drawn for additional tests (I had no idea what test he had done). Everything tested well within normal limits except the AGA-IgA, and it was only 23 (20-30 indicates a weak positive). He is going to do more testing, including the ones mentioned by Wish (the 2 that are recommended). So does this mean anything to anyone? Or not until I have more info on the other tests? I won't have those back until Friday at the earliest. Thanks for any help you can give!

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Another test that is needed is Total IgA. Some individuals (as many as 1 in 500) are IgA deficient and do not produce tTG. Apparently is possible to have positive Anti-Gliadin antibodies (IgA) and still be IgA deficient.

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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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