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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes


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About glux

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  1. I had a biopsy done last week to test for Celiac disease and any other digestive issues they might discover. I had some general irritation of my gut, but nothing remarkable and the doc said all of the pathology came back normal. Following the biopsy, I went back on a gluten free diet and I will say my symptoms have improved slightly over the past week. I've also discovered that I'm reacting to corn as well as rice (from what I can tell, just brown rice at this point). I began having pretty bad symptoms in October of 2013. You can read my original thread here for some background: http://www.celiac.com/gluten-free/topic/106259-not-sure-what-i-have/ Here are the Celiac related tests that have been done to this point: Celiac gene test - positive Celiac blood test - negative Biopsy for Celiac - negative My recent symptoms: Abdominal and back pain Joint and bone pain Fluctuation between soft stools and constipation Black specks in stool. This has improved since going gluten/corn free a week ago. Bloating Acid reflux Itchy skin all over, generally with no rash but occasional red bumps/rash on scalp and flushed face Anxiety Itchy eyes Adverse reactions to corn, brown rice and possibly some fruits Multiple other food and chemical sensitivities Burning sensations on the surface of my skin that move around my body Warm flushes through my body, chills, cold sweats Weight loss. I've lost 40 lbs since these issues started and I cannot gain the weight back, possibly because I'm having trouble finding foods I can tolerate. Fatigue after eating foods that cause a reaction, which seems to be most foods at this point. In my follow up appointment after the biopsy, the doctor basically was excited to inform me that I do not have Celiac and that I likely have IBS. While I may not have Celiac, lumping all of these symptoms into IBS doesn't seem right, but I'm not sure. Could this be NCGI? Possible corn allergy that cross reacts with rice and other foods? Possible seasonal allergies that get irritated by eating certain foods? Possible false negative testing for Celiac? I've had allergy testing done for both environmental and food allergens. I didn't show any food allergies (that was a year ago...maybe I have since developed a food allergy?) but I am allergic to a number of pollens and dust mites. My plan is to maintain a gluten, corn and rice free diet and see if my health improves then slowly add back in foods once I'm feeling better. Any other thoughts, recommendations or insight would be greatly appreciated.
  2. Thanks for the info, I'll be sure to mention it to the doc.
  3. I haven't had a biopsy as the rash doesn't look to be severe enough to be DH, but I could be wrong. I have a derm appointment next week to look at the white hairs that come and go on my scalp, hoping that I can find out what is causing the white hairs which may be another piece to the puzzle. Right now, I'm not sure if I want to go through a 4-12 week gluten challenge, but if I have enough symptoms that point to malabsorption then I may do the challenge to confirm. I've read on these forums that the white hairs could be caused by a copper deficiency and I already have a vitamin D deficiency and borderline low iron. The rash is only there when I'm reacting pretty badly for a few days, so it may not be there next week, but I'll have them take a look. Another symptom that I recently realized has completely gone away is canker sores on the inside of my lips. I had them for years but haven't had one since going gluten free (lite, as I have challenged a few times) about 4 months ago.
  4. Thanks for all of the replies. Just a quick update. I saw my GI doctor again and she ordered a Celiac DNA test. I should have those results back in the next week or so. She said that a gluten challenge is 4 weeks regardless of whether I do the blood test or biopsy. I thought it was only 2 weeks for the biopsy? I have had a couple more reactions in the past week or so and I'm now better able to tell when I'm reacting and monitor the progression of the symptoms. I'm still not sure it's Celiac as I'm pretty certain I haven't eaten gluten, yet I'm still having these reactions. They don't seem to correlate to any specific type of food. This is a typical reaction: Nausea is generally the first symptom and starts about a half hour before the following symptoms: Itchy skin itchy scalp muscle pain / numbness (back and sometimes neck) extreme fatigue fingers cold (possibly inflammation restricting blood flow..?) bloating smelly burps tingling in hands, general skin tingling irritability / anxiety difficulty concentrating I'm getting passed from doctor to doctor at this point and feel like I'm getting nowhere. I'm seeing an allergist next week for some environmental allergy tests as it seems that my symptoms are worse at home where we have pets and possibly dust allergens. Another symptom that seems to be related is my hair will be thicker or thinner depending on whether or not I've been reacting. I also get white hairs spread evenly throughout my scalp that come and go, also depending on whether I've been reacting or not. The hair issue has been going on for about the past 10 years. My hair hasn't gotten thicker or thinner overall, just varies quite a bit and the white hairs come and go. I'll sometimes find hairs that are half white and half brown. Should I see a dermatologist for this as maybe it could help with my overall diagnosis? Just wanted to see if anyone had any thoughts on these things. Thanks.
  5. Thank you for the information. The itching does seem to be related to histamines both in food that I'm eating and released during exercise. I've been trying to eat a low histamine diet the past few days and it seems to be helping a little bit. The bigger question though, is why have I developed a histamine intolerance? Here's a typical day lately: Wake up - feel OK, but my body is still sore from the inflammation from the previous day. Eat breakfast - feel OK for about an hour, then I start to get bloated, congested and brain fog. Can still function at work. Eat lunch - about an hour after eating lunch, the bloating, congestion and brain fog are still there, then comes the fatigue and inflammation...I could go to bed at 2pm most days and sleep all night. Eat dinner - all of the above, more fatigued and some joint pain and muscle pain. Occasional diarrhea if I eat foods high in histamines. Wake up the next day - body is still sore from the inflammation from the previous day. Rinse and repeat. Maybe I have another allergy that hasn't been identified yet that is "filling up my histamine bucket" throughout the day, not leaving much room for excess histamines ingested/released when eating? Taking anti histamines seems to help a little. I've been off of gluten for 4 months (not even certain that gluten is my problem anymore). Could these daily symptoms and histamine intolerance still be part of the healing process of my gut, or do I really have a mast cell/histamine intolerance issue, and the gluten only made me react because wheat is high in histamines? I know the only way to answer this question is to do a gluten challenge, but just looking for some possible insight and experiences from others who may have had similar recovery symptoms. I also had some more blood work done to check my vitamin levels. Here are the results: Iron: 50 (reference range 40-170) Vitamin B12: 914 (reference range 210-2000) Vitamin D: 22.2 (reference range 25-80) I'm taking a vitamin D3 supplement now as well as a B complex.
  6. Thank you for the ideas regarding histamines. After trying anti histamines for a couple of weeks, I came across histamine intolerance and avoided all foods that are high in histamines or cause your body to produce histamines and it seems that I saw a slight improvement. Maybe I'll revisit this. GottaSki - I noticed in your sig that you mention that high histamine foods were causing a heat/exercise allergic type reaction. My itching gets much worse after I exercise. What were your symptoms during/after exercising? Did you have a rash or just itching? Do you think it's related to Celiac? I don't have a rash, just itching.
  7. From what I've been reading on this site, it's possible to have a false negative biopsy right?
  8. Thanks for sharing your story. It would seem that if leaky gut was causing your body to create antibodies to gluten that you would have also developed multiple other food sensitivies, as other food particles would have also been leaking into your blood causing an auto immune response as well. Was that the case? I'm in limbo, trying to decide whether to pursue a diagnosis as I've been off gluten for 4 months now and the thought of eating gluten again is not something I'm looking forward to.
  9. Welcome! Your story is nearly identical to mine and I'm in much the same position trying to decide whether to purse an official diagnosis. I'm very new to this so I don't have much to offer in the way of advice, but I understand exactly what you're going through and i'ts no fun. The good news is that you've identified what's been making you sick all of these years, now you can start healing and feeling better and nobody can change that or take it away from you. Those of us who suffer from a form of gluten intolerance know how very real it is, official diagnosis or not.
  10. I saw my GP yesterday and he diagnosed me with hypoglycemia as I get extremely fatigued after eating just about every meal. It's already difficult trying to figure out what to eat, now this, ugh. From what I've read, this is a common problem for Celiacs? Does this improve with time/healing? Any diet recommendations to avoid the crash after eating every meal? I've been eating more vegetables than normal, which I discovered actually have a lot of carbs so I should probably cut back on them and eat more protein/fat? Thanks for the info NoGlutenCookies. I see the GI doc in about a week. I presume that they would order the DNA test?
  11. Thanks for the replies, they are very helpful. I should have been tested for Celiac before going gluten free but didn't know that at the time. At this point, I know I have a problem with gluten as my symptoms have improved a lot since cutting gluten out and I don't plan on ever eating gluten again, but would like to know if I have Celiac. It seems that I read somewhere on the forum that for a biopsy to be conclusive you only have to eat gluten for 2 weeks vs 4-6 weeks for the blood test? Also, would it make sense to have the DNA test done to see if I have the genetic markers for Celiac? If this came back negative, would this mean that it's not possible that I have Celiac, narrowing my problem down to non-Celiac gluten intolerance?
  12. First off, I apologize for this being lengthy and a bit jumbled. I've struggled with the following symptoms for years and I'm just starting to possibly put the puzzle together, but I'm still not certain that I have Celiac's and I'm not sure exactly where to go from here, so any help would be great! My current symptoms: I ate Chinese food about a week ago and reacted very badly to it. I figured it was the gluten in the soy sauce or other parts of the food. I can always tell when I'm reacting because I'm very irritable and my skin/scalp begin to itch really bad, like an itch once I scratch it, moves to a different part of my body and my stomach is bloated and I have bad gas and sometimes D, joint pain, bone pain, what feels like inflammation all over my body, fatigue and insomnia. My hair is also very variable in its thickness and texture. The texture of my hair seems directly related to what I'm eating and the texture changes day to day. I have had anxiety pretty much all of my life, but it had become worse the past 2-3 years. I felt like no matter how much I tried, I couldn't control my thoughts. Since going gluten free, my anxiety is about 75% gone (which is great). However, when I have these reactions, my anxiety comes back and I'm extremely irritable for 1-3 days, but my anxiety is usually really bad for the first few hours of the reaction, then subsides to about 50% for the next day or 2. I've also lost 40 lbs in the past 6 months, which I've mostly attributed to not eating gluten and in-turn, avoiding foods high in carbs. I am now reacting to foods that I've eaten all of my life without any issues, including: Bananas, avocados, pistachios, chocolate, almonds, possibly dairy and a few others that I can't think of right now. Basically, it seems as if my diet is very restricted as I have varying reactions with varying intensities. Just today, I ate a piece of chicken, pear and a slice of Udi's gluten-free bread for lunch and I've been reacting to that. The chicken was home-cooked with no gluten. This is just one example as it seems that I can react to just about anything right now. History of symptoms: In October of last year, I began reacting to virtually everything I ate. Reactions would include itchy skin and scalp but no visible rash or hives. Scalp would also burn and turn red/pink. I began doing research online and discovered leaky gut and thought this is what I have. I went gluten-free at this time which was around the first week of October. Went to see a general doctor near the end of October who didn’t acknowledge leaky gut as a real diagnosis but ordered general blood work. Thinking I may have developed a food allergy, I went to an allergist who did the skin prick test and that came back negative. I mentioned Celiac disease and he ordered a blood test for celiac that came back negative however I had been gluten-free for about 3 weeks at this point. My next stop was a GI doctor because I thought they could help with the symptoms that I believed at the time were related to leaky gut. During my visit, she noted that I was bloated and had pruritus on my scalp. She did not see a reason to do a scope. She thought that maybe my histamine pump in my stomach was putting out too many histamines, causing my scalp to itch and turn red. She put me on histamine blockers (Pepcid and Zyrtec) for 2 weeks. Those didn’t help. For as long as I can remember, I have had loose stool. During the past 3-5 years, I have had what I was calling 24 hour flu bugs where I would have diarrhea and extreme fatigue and joint pain for 1-2 days. This happened on a monthly to bi-monthly basis. I specifically remember it happening at Thanksgiving 2 years ago, but also missed many days of work with this “24 hour bug”. This was happening more frequently over the past 2 years. It would happen a lot after eating cereal and milk. Before going gluten free, I would eat cereal for breakfast every day and occasionally as a snack. After being gluten-free for 4 or 5 weeks, I “challenged” myself by eating a few slices of pizza. Within 20-30 minutes of eating the pizza, I began to have neck and back pain, then a headache, joint pain and fatigue. I went to bed early that night as I was too tired to stay awake. I woke up 4am with diarrhea and felt like I had the flu for the next 3-4 days including fatigue, joint pain and sporadic diarrhea. I was extremely irritable and moody with high anxiety. Following this, I have had what I believe to be accidental gluten exposure and had similar symptoms, but not as severe as the pizza reaction. Reactions always start 20-30 minutes after eating. My sensitivity then seemed to spread to corn as we made Mexican food at home that was all gluten free, including the corn tortillas. I reacted pretty bad from this and my symptoms lasted about 1 day. After feeling better, I started to question whether it was actually gluten that was my problem so I ate 1 slice of bread and had the same 1 day reaction that started within 20-30 minutes of eating the slice of bread. I have an appointment with a GI doctor in about 2 weeks and I have quite a few questions for her. I would like to get an endoscopy/biopsy done, but I haven't been eating gluten for 4 months now and the thought of doing a gluten challenge for a few weeks seems unbearable at this point. I've been to 6 different doctors now regarding these symptoms and I don't feel like I'm making any real progress. At this point, I feel like I'm just living through the symptoms and even going gluten free has helped me a lot, my reactions are still pretty bad even when I'm certain that I haven't eaten gluten. Is this normal? If so, how long before the reactions to everyday foods will stop? Does it sound like I have Celiac's? If not, any other thoughts? Thank you for reading.