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Some Sort Of Gluten Sensitivity?
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hi everyone,

first of all thanks for reading this. this is my first post. :) i am a 25-year-old female student who has struggled with "irritable bowel syndrome" for the past ~3 years or so. during those years i spent a long time trying to pinpoint what the hell was causing me so much gastrointestinal grief. as of now, i seemed to have narrowed it down and so basically, i just want to get some sort of lab test to confirm that i either have celiac disease, or some other non-celiac sensitivity to wheat and/or gluten. i want this so i can honestly tell people (dinner party hosts, waiters/chefs at restaurants, etc) that i have a medical condition in which i cannot consume anything containing wheat. i mean, it's a lot easier to explain to people at a dinner party that i can't have that bread/pizza/pasta/cake because "i have gluten intolerance" rather than than "well, because every time i eat that stuff, within about 4 hours i will get so bloated i will feel like i am about to explode, and then will be up half the night with major abdominal pain.."

anyway, general symptoms started showing up about a year and a half ago (bloating, gas, *major* abdominal pain, alternating diarrhea and constipation). i saw several doctors (even went to the emergency room a few times when the pain was really bad) but basically nothing ever came out of it..they all seemed to say it was just to due to stress or eating fatty foods. however, i ate a fairly nutritious diet (no junk food whatsoever, plus i cook a lot). i did try removing dairy products from my diet, and also meats, but the symptoms persisted.

so it wasn't until late July of last year (5 months ago) that i began to get a clue on what was ailing me. by some (extremely fortunate) random accident i came across a link describing Candidaisis (yeast overgrowth in the intestines). the symptoms described me to a T, and so i followed the recommendations of an anti-candida diet (consists of eliminating things like sugar, artificial sweeteners, mushrooms, peanuts, milk and gluten-containing grains such as wheat).

i began following the diet more or less, and my symptoms improved significantly. then in August, a naturopathic doctor (ND) performed a series of electrodermal tests on me, which said i was allergic to wheat. now, i know that most people believe that electrodermal testing is a crock, but at the point i started to wonder if my sensitivity to wheat might actually be real. i began eliminating wheat more strictly from my diet, and my symptoms continued to improve. In October i went my doctor and told him I suspected i had Celiac disease. He said it was unlikely since i was not underweight (i'm 5'6" and 130lb) and i didn't have chronic diarrhea, etc. also apparently celiac disease is more common in people of northern european descent (im hispanic). however he did set up a few tests: a blood tests for gliadin antibodies, and an Upper GI test looking at small intestine. the Upper GI test was normal (no evidence of sprue or anytime of damage), however by then i had been on a wheat-free diet for about 3 months. and the blood tests turned out surprising..IgE and IgA were normal, but IgG was high (27, normal is below 20). the doctor suggested i might see an allergist (re: suspected wheat allergy) and get a blood test again.

so, i did see an allergist in late November and she noted that for the past few years I have been anemic (ferritin level of 1.0, hematocrit of around 31). she prescribed an iron supplement and then said that a month later i get re-tested for the IgG and IgA, and also get a skin test. so a few days ago i got another blood test. and today i went to the allergist again, and got a skin test (the one where they prick your arms and test you for like 50 different things). anyway, all the skin tests, incl. wheat came out negative (she noted, however, that that ruled out specific wheat allergy, but not celiac disease). regarding the blood test results: the RAST test for wheat was negative, and IgA was fine (i think it was around 7). But my IgG was abnormally high again (26, where normal was <20). She also said that i was still anemic (ferritin of 2.0, and hematocrit of 34), but was slightly improving. The allergist then referred me to a gastroenterologist, which i'm supposed to see on wednesday.

so first of all, thanks to anyone who has read this far! :) my basic question is, now what? with the IgG result, can i now honestly say that i have a sensitivity to gluten? I have been "researching" on my own using Google and i have found that anemia is quite common among ppl with gluten sensitivity, because the absorption of iron is somehow disrupted. also, i read that the IgA antibody will become low/normal in a gluten-sensitive indivudal who has been following a gluten-free diet. anyway, i am wondering if there its still likely for me to have celiac disease, and if not if there is some sort of non-celiac gluten sensitivity that could exist. i just want some medical statement, written in paper, signed by some doctor that says i shouldn't eat wheat! i just need to prove to everyone else that it's not just "all in my head."

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Hi, I had one blood test come back indicating celiac, and the other negative. My Dr. is doing a biopsy the 20th. I have been keeping a food diary for 3 weeks, have eliminated all gluten and most dairy, and it doesn't matter to me what the test shows, I know I 100% have a gluten intolerance. I haven't felt this good in years. I'm only 35 and most days felt like I was 90. I had joint pains that got worse everyday and terrible tummy troubles, my old Dr. just wanted to give meds. to cover all the symptoms up, but my new Dr. is awesome. The dietician told me there are alot of false negatives with celiac. You can have gluten intolerance and not have celiac. The diet is very hard to follow, the dietician said it's the 2nd hardest diet in the world, and it 's lifelong. Have you been keeping a food diary? She also recommended recording emotions as well as other symptoms. It's truly amazing. If you're around people who think it's all in your head, tell them to spend the day on the toilet a few times and then tell you what they think! :D Good luck to you. Keep me informed on how you're doing.

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sweetneet,

Welcome to the board! I'm glad you found us! And it's great that you have been observant and self-aware enough to narrow down your trouble on your own, since doctors have an annoying tendency to disregard the dietary connection to illness.

Yes, the gluten-free diet will allow your antibody levels to normalize, but there's another possibility, too. Did your doctor test your *total* IgA level, or just the anti-gliadin IgA level? It is possible that you might have "selective IgA deficiency," which would result in low/normal IgA readings even if you do have celiac disease. Your IgG levels would be unaffected, however. Without a total IgA test, negative anti-gliadin IgA results are inconclusive!

You may also want to have a look at the website for Enterolab and check out their testing options, as a backup or adjunct to conventional testing if nothing else!

I wish you the best of luck as you seek a conclusive diagnosis, and feel free to ask questions anytime!

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sweetneet

First of all whatever pain you are in know that it is not in your head. I am so tired of hearing that since I have been told that all of my life. I have a diagnosed celiac for 7 years and let me tell you, I can relate to alot that has been said. All the things you have been through I have been there and back. I have never been blood tested I had an endoscope and it confirmed celiac. If you go gluten free though before the biospy then the reading will get compromised and not get a true reading. I think you should tell your G.I when you go that you have stopped eating gluten. He will most likely tell you to start eating it again then retest. I'm not saying you have Celiac Disease but you sound exactly like me.

Good luck with everything and remember fight for your health because nobody else will!!!

:P

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hi everyone, thanks for all the replies!! :)

regarding my previous blood test, i think i don't know if it was the total IgA count or not. i will ask the doc at my next appt!

also, i did end up going to the gastroenterologist the day before yesterday. he said that this point there's not much evidence to do a biopsy (since the IgG was not that that much higher than normal, and the other tests were OK). apparently it's not that uncommon to have slightly elevated IgG? however, he sasid that he might schedule a biopsy if "more evidence" for gluten enteropathy shows up, i.e. i'm still not absorbing iron properly. i got another blood test done yesterday to test to see if i'm actually producing iron (the blood test i got a week ago tested ferritin, which is apparently just the iron _stores_).

anyway, i guess i was sort of disappointed since i know that even if i do end up getting a biopsy, it probably won't show anything since i've been on the gluten-free diet for about 5-6 months. i heard some people in this forum say they go back on gluten for testing, but exactly how long does that take? hours? days?weeks? if it's weeks or more i'm sort of unwilling to do it, since it causes so much pain/discomfort and plus i could potentially be damaging my intestines on purpose. :( for the blood test i had a week ago, i just ate gluten the day of the test (ate wheat bran cereal in the morning, then a sandwich with a whole wheat bun around noon..i took the test around 3). i wonder if that was enough..do i have to go back on gluten for several days or more?

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Sweetneet,

Unfortunately for most of the tests for Celiac's you must be eating Gluten containting products. The only one I can think of is the HLA-DQ2 which checks for a certain gene. But for the IGG, IGA, TTGAB and the biopsy you have to be eating Gluten. There is always Enterolab, though I must admit that I am not sure on the reliability as I have not used them *yet*.

Hope this helps you out some..Sorry I couldn't be of more help.

Steph

Mom of two.

One with Gluten Enteropathy, Reflux, Gastroparesis. Youngest with Reflux and Gastroparesis (scheduled for Biopsy tomorrow morning). :D

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Sweetneet,

Unfortunately you have to be on gluten for at least a week to show any signs of damaged villi for the biospy. I'd say don't go on it if you don't have a biopsy scheduled as you could do damage to you intestines when you don't need. I'd push for the biospy if you think you have it. I've haven't had any other tests to conclued Celiac so I don't know about all the blood test jargon, but I do know that the biopsy worked for me!!

:o

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Hi everybody! I have been eating gluten products for a week now after being gluten-free for almost a month, doing this for biopsy in the a.m. I have been totally miserable, reminds me how i felt for years, but I thought it was totally normal to feel like that because of ulcers and gerd and hernia. Even if my biopsy comes back normal, I intend to remain gluten-free because my specialist said gluten sensitive and celiac are different. So just wanted to let ya know , if you feel better off gluten foods, stay off them, regardless of test results. It's a very hard lifestyle change, but I am looking so forward to a couple days from now feeling as good as I did last week off all gluten! good luck to all.

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    • Another link: http://naldc.nal.usda.gov/download/7351/PDF
    • Thanks for posting.  I know it is difficult to talk about these sorts of things even on a webforum.  It is good thing for people to be aware though about celiac disease and that it can cause mental problems.  Gluten can cause brain damage and it can cause anxiety. If the brain does heal it may take a long time. I know that gluten can cause anxiety and obsessive thoughts.  My experience has been similar to your experience. When I first quit eating gluten I had a similar constant loop and strong negative feelings. There are lots of people on this forum who get anxiety when they eat gluten. Some people also experience gluten withdrawl where they experience anxiety after giving up gluten. It can take a long time for the body to heal and for obsessive thoughts to go away.
       It is normal for people to socialize with each other and to be comfortable about it. You said you have problems still socializing and being around people. It might be a depressing thought but it sounds to me like you still have problems with anxiety.  I would recommend considering what options you have available to treat the anxiety. When I quit eating Gluten I still had some symptoms, even though I felt much better. I have been slowly recovering over a period of about three years. I had obsessive thoughts even after I quit eating gluten.  Now I very rarely if at all think about those things. My experience is that my mind would latch on to certain things that caused me anxiety and focus on those things. Sometimes my focus would shift and I would latch onto other things. My ability to socialize has also improved greatly with time. I have made some dietary changes which I believe have helped greatly. It sounds to me like you have obsessive thoughts about things and maybe some brain damage. My experience has been that my obsessive thoughts about different things went away with time. I feel my obsessive thoughts were caused by gluten and not by what people did around me or any events. As my brain healed I became more self aware and things became less stressful.  I can't give medical advice on this forum but I can talk about my current diet and my experience with celiac disease. My experience with gluten is different from a lot of other people so it is a good idea to ask other people and to talk to a doctor.  I avoid oats and avoid almost all processed foods. I buy certified gluten free food. I eat healthy and I exercise every day. I take st John's Wort as I have read studies that say it may be as effective as some other anti-depressants for treating certain types of anxiety. It is available over the counter. I started with a small dosage and then stepped it up over time. I think it helps a lot.  This is also something that you should talk to a doctor about first. https://www.researchgate.net/profile/Martin_Mahoney2/publication/7426926_St._John's_wort/links/540d8acc0cf2f2b29a386673.pdf A lot of people with celiac disease have vitamin deficiencies.  Vitamin b deficiency can cause anxiety. Some people do not process the synthetic form of vitamin b (from normal pills)  very well, and do better on an activated form of vitamin b. I take:
      1 activated vitamin b12 daily
      1 activated vitamin b6 every once in a while. 1 regular vitamin b multivitamin
      1 magnesium pill every day.
      St Johns Wort daily.
      1 zinc vitamin daily
      I drink lots of Chamomile tea and decaf coffee. I avoid most caffeine. 
      I think each of these helps lower my anxiety level.  I eat fruit with every meal. Canned fruit from walmart is cheap and good for you. I eat salad and and vegetables and avoid dairy.  I eat frozen fish often as it has healthy proteins. Eating healthy is very important. I eat potatoes and rice. http://www.livestrong.com/article/454179-what-is-methyl-b12/ I avoid eating soy sauce, soy, cheese, aged meats and fermented foods (I do drink certain types of alcohol in moderate amounts.) These foods contain lots of Tyramine. I might (or might not) have "monoaine oxidase deficiency" and if so high Tyramine foods should be avoided.  I thought I might have problems with elevated ammonia in my blood, but I am not convinced of that anymore. I limited my consumption of meat for a while as well as dairy but I am not sure if i helped.  I have heard that Celiac disease can effect other organs besides the brain and those organs can have an effect on the brain.  My current diet is working so I am going to stick with it for now. I try not to worry about things that are outside of my control. Be patient as it took me a long time to recover.  Let me know if you have any questions. There is a lot of information on this site and people who are willing to help.
       
    • Thank you. This is really helpful. I will call around next week.  I just want to heal! 
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    • Spicely Organics has both cassia and true (Ceylon) Cinnamon and are certifed gluten free along with the rest of their spices, as to tea Republic of Tea has most of their products tested and certified gluten-free also. You can visit their sites or try Amazon.
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