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Is It Celiac Or Something Else?
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9 posts in this topic

:unsure: I had the celiac panel done a few months ago and the results were Gliadin AB IGA negative <20 Gliadin AB IGG 35 >30 positive and endomysium AB W/RFX Endomysial AB IGA negative. I have gone thru a lot this year. I had surgery for breast cancer in May, radiation thru August 3 and then started the gluten-free diet. They said I did not need to have a biopsy, but now I wonder. I do not feel much better- I have been losing weight, no appetite, have high cortisol levels, and tired but don't sleep well. It is hard to do anything and I take xanax to stay calm. I am seeing my doctor today to see if I can still see a gastroentologist even though I have been on the diet a couple months, though I know I make some mistakes. Any help would be appreciated. Thanks.
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Of course I can't tell you from here whether it's celiac, but if you've been gluten-free for just two months AND you know you've made mistakes during that time, I'm not surprised you haven't felt any improvement, even if you do have celiac. Two months isn't much time and some people feel bad for a week or longer after every mistake.

richard

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I've got a question. I went gluten free, felt 100% better. Yet understood to have the biopsy's you had to be consuming gluten. Now that I'm consuming it again for a week, I've had no major upsets. Does this mean I dont have celiac disease?

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Plenty of people who have celiac can eat gluten with no obvious symptoms. Your lack of a reaction means nothing.

richard

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Also, after only eating gluten again for a week may not be enough consumption to make your test results accurate. I believe the official standing on the biopsy is that you must consume gluten for 3 to 6 months prior.

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Richard/Stargirl,

Thanks. Whatever this digestive issue is, it has me feeling like I'll lose my mind. This website is great!

Dana

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:huh: Hi! Thanks for the replies. I just got my son's test back and before, they said it was okay, but now they said his IGG AB was 51. So it was higher than mine. How accurate is the test and could it be something besides celiac? Just cuirious. I go to a gastroentologist Wednesday. I did not realize how strict the diet is, I guess. I did not know one little bit of gluten could cause so many problems. Thanks.
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Don't forget that normal IgA's don't tell you a thing if you don't also have a total IgA test to find out if you're IgA deficient in general.

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Hi. I went to a gastroenterologist yesterday. He also wants to do a biopsy and since I have been on the diet a couple months, i wonder if anything will show up. i have been feeling so lousy lately. Also, I got a copy of my son's labs: Ttg=1 <20 negative, IGG AB 51 <20 negative and IGA AB 4 <20 negative. I asked the doctor about him going on the diet and see said I could try it for 6 months, but the standard test is the biopsy. I think I need to go to one who specializes in celiac. I felt like I know more than him because of my researching. My son has had two inner ear infections this year, is tired, and dizzy once in awhile. He does get heartburn too and I just think I should try the diet. Anyone have any suggestions? If you have IGG antibodies you are sensitive to gluten, right?

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    • What?  Wine that contains  milk?  That is new to me.   You know that there are about 300 symptoms for celiac disease and you do not have to have intestinal issues.  You do not even have to have ANY symptoms (aka silent celiac).  I think you need to wait for your endoscopy.  When is it scheduled?  I assume it is not for months and that you will be expected to consume gluten daily for 2 to 4 weeks (called a gluten challenge) prior to the endoscopy.  Because you have to be on a gluten-containing diet to get results (see University of Chicago's celiac website).   Celiacs can have many intolerances that can resolve once the body heals.   I would be worried about getting a proper diagnosis.  Did your doctor advise you to go gluten free prior to the completion of all testing?  
    • Ah, more information trickles in...... There are a few things that may elevate a Ttg igA result: 1)  celiac disease, 2) Lyme disease, 3) another autoimmune disorder.  Someone recently posted during the Last month who had a very elevated TTg but ended up not having celiac disease.  Instead he was diagnosed with Lyme disease.  My memory could be wrong, so do the research.   The bottom line is that further research by a GI is recommended.   Celiac antibody results do not always correlate with the severity of intestinal damage in someone with celiac disease.  That is why an endoscopy/biopsies is still the gold standard for diagnosis.  Europe is opting to avoid the endoscopy in small children, but not the US.   Her IgG Celiacs tests were negative, so he is checking for a wheat allergy?    
    • Awok, Welcome to the forum.  Have you considered trace gluten?  Here is a study on the topic: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3598839/pdf/1471-230X-13-40.pdf It could explain why you felt good for a while.  I personally was glutened badly last summer.  I have no idea what got me.  I suspect either a prescription medication or one gluten free product (not certified).  I ended up on a whole foods diet and avoided even certified processed gluten-free foods including grains until I was healed (three to six months).  
    • I've had a range of symptoms in the last 2 months and in the past few weeks I have discovered that my TTG abs (igA) levels were 41 (my igA tests were fine). The doctor said that he is pretty much certain that it is celiac disease and I am awaiting an endoscopy to confirm it.  Before I found out that my TTG abs (igA) levels were high, I noticed that my body was reacting really badly to dairy products. I went on an elimination diet and stopped all gluten and dairy products and felt much better. I carried this on after my results and thought that I must have developed a dairy intolerance due to my celiac. 2 days ago I accidentally consumed a glass of wine which I thought was dairy free but it contained Milk. I have not had any gluten.  I am currently in the middle of a flare up. All of a sudden rashes have started to appear on my hands and my anxiety has returned (usually not a anxious person). No diarhhoea, vomiting or digestive issues. I am currently suffering from muscle twitching, rashes predominantly on hands and feet, brain fog, pins and needles/numbness on hands, feet and arms. However, I have been tested for milk allergy and this came back negative. Is it possible that it is dairy that is causing my symptoms/autoimmune reaction and could this be a reason for elevetated TTG abs (igA) levels. Or has the doctor only picked up my celiac and missing something else. If it was dairy intolerance then I would have digestive issues but I don't seem to have any. Could it be the casein protein?  Anyone been in a similar situation or can anyone provide some insight? 
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