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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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    • Hi, I am 20yrs old and have had this weird stomach pains on and off for 2 years. They started by just having pains on my left side when I sucked in or pressed on my tummy. In the last 3 months they have gotten really bad, with a lot of bloating and used to occur almost every time just before bed I would get bloated, and feel constipated like I just needed a hole in my stomach to release the pressure. I have had tests for lactose and gluten, and they both came back negative. I was not having any gluten at the time of the test which I have read can affect the results. I had little help from my doctor so I went gluten free which was working really well and I would only have pain once every two weeks. The last three nights were awful, I was in so much pain I struggled to walk, and again they would go away in the morning. I looked like I was pregnant and relief was only through passing wind (sorry for the detail!). I was wondering if anyone has had similar experience, or could point me in a direction to help me. The weird thing is that I did have gluten one day and that didn't seem to affect me at all. Then I will have something like vegemite (I'm from Australia) and this is the only thing that I can think off that would set me off (it contains wheat). So I don't really know what do to or where to go, these stomach pains have been heightened since I had a horrible gastro for a week, and went to hospital. Could it be possible that my gut lining has been damaged? I have become really stuck on what I should do next, as tonight my stomach is fine, I actually feel hungry (previously I have felt super full as a result of being bloated), so I have no idea what triggered that horrible episodes before I went to bed for the last few nights. Any thoughts or suggestions would be amazing, thank heaps
    • I found when I went gluten free I started eating more dairy and that gave me worse stomach aches and bloating than the gluten did. So now I have to avoid gluten and dairy.  Maybe you have a similar problem with something you are eating.  I hope you feel better soon.  
    • Hi! I received my "official" celiac diagnosis last week. I had an endoscopy last month that was originally looking for ulcers and h. pylori, but they did some biopsies of my duodenum since they were in the neighborhood and the biopsy came back "consistent with Celiac's disease" and later. They urged me to get my blood checked and follow up with my primary doctor. My blood work came back negative, but my doctor was confident it's Celiac so told me to stay away from gluten. I've been completely gluten free (or to the best of my knowledge) for 2 weeks now, and my results are mixed. At first, I felt great! My stomach was no longer CRAZY bloated once I stopped eating pasta and bread, my acne started healing, and the red rash on the back of my arms started to fade. That was the first few days. Lately, though, my acne is once again flaring up and I've been SO EXHAUSTED. I feel so tired all the time. Even now I have fatigue in my head, limbs, and I could hardly walk or move my body earlier today. I'm overweight and I like to go to the gym, but what used to be an easy workout for me is kicking my ass! I used to go to the gym and tear it up: HIIT on the treadmill followed by 40 minutes of heavy weight lifting. Now I can hardly finish 3 reps in my first set without feeling like a nap. I can't run anymore because my body feels clumsy and heavy. Also, I'm still bloated. I don't suffer from painful, acute bloating, but I struggle to pass gas and I look like I have pregnant belly. I think I'm also retaining water all over my body, and I'm not sure if that's normal? For whatever reason, I have this belief that water is mainly retained in the core and not arms, legs, and face. Anyway, I'd love to hear what you have to say/what you've experienced. Is this typical to first going gluten free?
    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
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