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      • Frequently Asked Questions About Celiac Disease   09/30/2015

        This 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 FREE email alerts What are the major symptoms of celiac disease? Celiac Disease SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan 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-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs 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 BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity


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    About alevoy18

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    1. alevoy18 added a topic in Celiac Disease - Post Diagnosis, Recovery/Treatment(s)   

      3 Year Followup - Biopsy Results
      Hi everyone,

      I just recently had a 3 year followup scope due to multiple nutritional deficiencies and recent weight loss. Here are my results below. My 2 year followup showed very minor villous abnormalities and only plasma cells in the lamina propria. I am wondering if anybody knows what "foci of neutrophils" means? Or any other experiences are appreciated. THanks a lot!

      Preoperative Diagnosis:
      - Recently tTG-IGA spiked to beyond 200+ levels
      - Rule out refractory sprue and lymphoma

      Postoperative Diagnosis:
      1. Small bowel appearance classic for celiac disease, refractory to years of gluten restriction.
      2. Small bowel folds show evidence of complete flattening of the villi, multiple mucosal ridges, endoscopic scalloping, mosaic appearance and classic cracked cement appearance. No frank ulceration or friability or mucosal lesions frankly seen. No luminal narrowing or dilated areas. The pyloric channel is clear.

      Pathology Report:
      1. Villous abnormality, acute and chronic inflammatory cells in the lamina propria and increased IEL's found

      Sections show villous abnormality varying from slender to blunted to completely flattened villi. These are increased inflammatory cells in the lamina propria composed of lymphocytes, plasma and foci of neutrophils. IEL's are also increased and present. These finds are non-specific and consistant with Celiac Disease. No evidence of lymphoprofilerative disorder is seen. Slides reviewed at intra-departmental rounds.
      • 2 replies
    2. alevoy18 added a topic in Celiac Disease - Post Diagnosis, Recovery/Treatment(s)   

      Low B12/ferritin/testosterone

      I have been diagnosed with Celiac Disease (Nov 2009) and Addison's disease (May 2011). I also am being investigated for autoimmune hypopituitarism due to low LH/FSH/Testosterone as well. My question is regarding my vitamin levels. Here were my levels pre and post treatment:

      August 2011
      B12 = 151 (range 150 - 900)
      Ferritin = 46 (range 30 - 300)
      Free Testosterone = 4 (range 30 - 90)
      LH = 1 (range 4 - 12)
      FSH = 3 (range 3 - 15)

      September 2011
      B12 = 75 (range 150 - 900)
      Ferritin = 20 (range 30 - 300)

      * Started B12 Injections every two weeks *

      Feb 2012 (levels taken 2 weeks after last injection)
      B12 = 160 (range 150 - 900)


      My questions are,

      1. Is it normal for my B12 to only be at 160 after all these injections. I would think two weeks post injection, my levels would still be higher.

      2. The doctors said while my ferritin is low, it is common in celiac and is not urgent to be treated. I would think a 25 year old male should have a ferritin much higher than 20 and does anybody know what would cause it drop so quickly?

      3. Does anybody know why testosterone levels would drop, no pituitary tumors were found.

      I know nobody hear is a doctor, but any input is appreciated. Thanks a lot!!
      • 0 replies
    3. alevoy18 added a post in a topic Hm... Any Advise?   


      I'm really sorry to hear you are struggling right now and I hope it gets better for you. I just wanted to let you know that I had orthostatic hypotension, salt craving, palpatations and autonomic dysfunction. I had to have a pacemaker put in because my heart would slow down inappropriately too much. I also suffered from weakness and had trouble with stairs, walking far or exercising. Then in one month I started to lose weight fast. At first they blamed Celiac Disease until I started getting worse, even after going gluten free. It all turned out to be Addison's Disease. If I were you, I would ask your doctor to test AM Cortisol and ACTH or ask for the ACTH Stim test. I'm not saying that is what you have, but it sounds similar to my story and it could be related to your adrenal glands. It is better to be safe than sorry. I wish you the best!!!
      • 1
    4. alevoy18 added a topic in Celiac Disease - Post Diagnosis, Recovery/Treatment(s)   

      B12/ferritin Extreme Drop - Advice Needed
      Hi everyone, thanks in advance.

      I'll try to keep this short, but I'm basically wondering if my GP is overreacting or not. Here is my sequence of events:

      Nov 2009 - Celiac Diagnosis tTG=56 - biopsy Marsh 3B - b12=210 ferritin=60
      Nov 2010 - tTG=40 - b12=180 - ferritin=52
      Mar 2011 - Addison's diagnosis with low cortisol and high ACTH - started cortisone
      July 2011 - Hypopituitary diagnosed with severely low free testosterone and low LH/FSH - started testosterone therapy
      Aug 2011 - tTG=286 - B12=151 - ferritin=48
      Sept 2011 - tTG=275 - B12=75 - ferritin=19

      I started to get really sick and lost 30 lbs in 3 months, so I had a repeat biopsy and tTG in Aug of this year. Endoscopy showed damage has improved slightly to Marsh 3A, but still there, yet tTG is now 286 (normal <20). GI was extremely confused. Endoscopy showed increased IEL and it worded it as "extremely heavy plasma cell and IEL infiltrate, but no definite abnormal cells found". I am waiting for immunostaining to be done to check for refractory, but it takes awhile. AT my age, I'd expect this is not the case.

      While waiting I went to my GP and told her I've been having lots of joint pain, nerve type pain and feeling weak as of late. She rechecked my B12 and it was 75 (range 250 - 1000). My ferritin was rechecked too and it was 19 (range 50 - 300). My GP is really concerned with the sudden drop, especially since I am a 25 year old male, so I should be higher. She has called my Gastro and asked him to see my immediately as she said my levels should not drop that fast. I;m not too worried honestly, as I have addison's and autoimmune hypopituitarism (caused low testosterone and LH/FSH) as well, so I know my body is messed up.

      Does anybody have any experience like this or knowledge in the area, as help is appreciated. I'm just not sure if her worry is warranted or are these levels not that bad? Any help or advice is appreciated! Thanks.
      • 3 replies
    5. alevoy18 added a post in a topic Patholoy Report - Followup   

      Thanks to both of you.

      Yeah I've been strictly gluten free for these two years. I made mistakes in the beginning, but over the last year I cut out processed foods. But as I got stricter, my numbers got higher. I am happy to see only Marsh 3A since I expected 3C, but who is to say it even really improved because another biopsy could show 3B (this was just 3 biopsies). I really was hoping for the staining results, but I didn't see mention here.

      I have been tested for other food allergies and lactose, but negative for all. I had no GI symptoms through all of this, but over the last 2 months I've had gas, small amounts of mucus in stool, some floating stools and major constipation. Sorry if that is too much info. Who knows whats wrong, but no tumors or signs of lymphoma makes me happy at least!!!

      Thanks again
      • 0
    6. alevoy18 added a topic in Celiac Disease - Post Diagnosis, Recovery/Treatment(s)   

      Patholoy Report - Followup
      Some of you may know my history from past post. To summarize what has happened. I was diagnosed MArsh 3B and postive tTg-IGA (56 when >20 is strong positive) two years ago. Recently I had an tTg-IGA test come back as 372 (normal <20). My Gastro was alarmed by this number and said he has never seen anything so high. He just did an enteroscopy and have received the results. We are still waiting on the CD3/CD8 staining to rule out refractory sprue. My questions about the report are below.

      1. What does "no definitive evidence of abnormal lymphocytes" mean? Why wouldn't it just say "No abnormal lymphocytes" like my first biopsy results said? Any insight here?

      2. With a tTG of 372, my Gastro was sure it would be total atrophy. Also, he said by visual my intestine looked complete flat, cracked and fold scalloping. He said it looked like a textbook case of complete atrophy. With all of this, it seems weird it is just a Marsh 3A result?

      3. Any reason why they mentioned the "Heavy infiltrate of lamina" when it already says increased IEL. Isn't that the same idea?

      4. Any idea why this was chosen for Internal Consultation? I'm not sure what this is as my last one didn't have this.

      5. My Gastro said he sent if for CD3/CD8 staining, but I don't see this mentioned here. Would it be a separate process since this is just the original surgical pathology report.

      I know some of these questions probably wont have answers, but I wanted to see if anybody had experience. Thanks a million!!

      The biopsy shows duodenal mucosa with mild villous abnormalities and increased IEL counts. The lamina propria shows heavy infiltrate almost entirely made up of plasma cells. In view of clinical history, the morphological findings are compatible with Celiac Disease. There is no definitive evidence of abnormal lymphocytes.

      This case has been discussed at our internal consultations on Sept 9, 2011
      • 5 replies
    7. alevoy18 added a post in a topic 2 Year Follow-Up Enteroscopy   

      Thanks everyone for your responses. To answer your questions,

      First, I apologize, it has been 6 months since my last tTG, not one year (I just looked it up).

      Pills: The only new pill is my Cortisone for adrenal insufficiency. I have started cortisone due to my adrenal testing starting to show signs of failing, it is early but my ACTH was high, 24 hour urine free cortisol low, serum am cortisol was low-normal but I also had a fasting blood sugar of 44 which should of caused the cortisol to spike. All in all, I was started on 37.5mg of cortisone daily. I checked with pharmacy and this was supposed to be safe (they know of my issue and are supposed to check for me regularly).

      Supplements: No, nothing new since I was diagnosed. All Jamison gluten-free vitamins since 2009.

      Restaurants: I initially ate out at restaurants that had gluten-free options around 1 time a month when first diagnosed, but I don't eat out anymore since my test 6 months ago was unchanged. So I have gone less in the last 6 months than previous tests.

      Remodeling: Once again, I haven't done remodeling since year one of diagnosis when I redid the basement.

      Pets/Hobbies: Same pets over last 5 years and no new hobbies I can think of.

      Spouse: She's been a thorn in my side for the last 5 years, so nothing new there :-)~ jk

      Makeup: I'm male, so no makeup, except on weekends...nah no makeup ;-)

      Oats: I have never risked it.

      Food Guide
      I am a very very boring eater, I will eat the same foods for a year and not change because they are safe. This is a basic day for me and it has been that way for a couple years now.

      Breakfast: Nature's Path gluten-free cereal (no oats at all)
      Lunch: Some vegetables like broccoli with chicken breast or other protein (sometimes rice).
      Dinner: Something like a sweet potato, corn on the cob, salad (made by me) or other vegetable with a starch like rice or rice pasta and a protein from the freezer (chicken breast, fish, steak, pork chops)
      Snacks: Fruit, homemade gluten free cookies or treats made from Bob Red Mills Soy Flour and very rarely gluten-free cookies/chips.
      Drinks: Diet Pepsi, Coffee (100% coffee verified gluten free) and water usually

      That is just it, over the last 6 months I cracked down on anything that might cause CC because of my last tTG not going down. I was expecting to see an improvement or at worst, another 20ish test. THen the almost 200 tTG came and thought maybe that was a mistake, but nope, the enteroscopy shows worse confused.

      Oh yeah, I almost meant to mention that I don't have any symptoms. The only reason my gastro did the repeat enteroscopy is because I went from 155lbs down to 133lbs in 2 months (5' 8" male - 25 years old) and my vitamin levels were dropping fast (B12 went from 270 to 135, slightly anemic, ferritin down from 90 to 40). No Diarrhea, no stomach pains, no gas. I had all this pre-diagnosis, but none now. How can I have total villous atrophy with no diarrhea?? So confusing

      Thanks everyone!
      • 0
    8. alevoy18 added a topic in Celiac Disease - Post Diagnosis, Recovery/Treatment(s)   

      2 Year Follow-Up Enteroscopy
      Hi everyone,

      After two years gluten free, my tTG went through the roof. It was initially 28 (range <10) in 2009, then it was 26 (range <10) in 2010 and now it is 186 (range <10). I had a scope this morning with an extension on it to look further in the small bowel (called a Enteroscopy). The initial results are below. The doctor came and spoke to me. He said my results showed text book advanced celiac and will likely show total villous atrophy. When I was original diagnosed, I was at Marsh 3b (subtotal atrophy). He said when the biopsy results come back, he will also send them to another hospital for CD3/CD4 staining. He said the odds of occult lymphoma or refractory sprue are low, but he can't rule anything out until the biopsy comes back. I don't understand, if there was no tumor or mass, how could lymphoma even still be an option? Does anybody know anything about CD3/CD4? Thanks a lot!

      Procedure Results:
      - Normal esophagus appearance
      - Normal stomach appear (1 biopsy taken)
      - Abnormal small bowel appearance
      - mucosal atrophy
      - "cracked cement" appearance
      - mucosal scalloping
      - mucosal ridging
      - 5 biopsies taken
      - 0 mass lessons found

      Need to rule out refractory sprue
      Biopsies taken for CD3/CD4 staining
      • 7 replies
    9. alevoy18 added a post in a topic Need Some Advice   

      I got a call today from my Gastro doctor. He said that he is scheduling me in for emergency Endoscopy this week as he has never seen a tTG jump this much or one that was 20 times the range before. Not encouraging to hear from your doctor but hopefully all will end up well, thanks for the help!
      • 0
    10. alevoy18 added a post in a topic Need Some Advice   

      Hi T.H., thanks for the response.

      I too also pondered about whether or not being extra sensitive has anything to do with it, it is always a possibility, but going from the 20's to near 200 seems extreme. Who knows whats possible though.

      I have not spoke to my gastro since my results came back, just my GP, so I will find out if they are going to test for anything else next week.

      I eat nuts and dried fruit regularily as snacks. I thought this would be a safe way to snack on less processed foods, but I did not know about the lack of warning labels! Do you know if this applies to Canada to, as this is where I am from. Thanks for letting me know this.

      Wow, CC on gluten-free flours, nothing seems 100% safe anymore.

      I avoid ground meat as it worries me too much to risk it. I was planning on adding it in slowly if my tTG levels ever went down to normal, but at this point, I don't plan on eating it anytime soon.

      The oats thing is a possibility too, so is this a risk with all rice or was it a specific brand that had issues? I am assuming any of them could have the risk, but how do we avoid it? I wish things could be clear and cut, but that is a pipe dream.

      A number of companies that process gluten-free flours and grains may also process gluten-free oats in the same facility, like Bob's Red Mill. Anything that is CSA certified, though, has to take steps to prevent oat cross-contamination, so they are safer for that sort of thing.

      I'll have to look into my oil, I thought it was safe, but I'm going to call the company to double check. THanks again.

      I agree about the meds, it has been awhile since I looked them up and it could change at anytime with the way people want to save money now adays. I will look into it again.

      Thanks for all your help!!!
      • 0
    11. alevoy18 added a post in a topic Need Some Advice   

      Thanks Ravenwoodglass, I appreciate the response. To answer your questions.

      1. No, the only cereals I eat are Nature's Path gluten-free Mesa Sunrise, Nature's Path gluten-free corn flakes & Glutino Honey Nut O's. I avoid oats all together as I didn't want to risk it.

      2. I am on a Cortisone for adrenal insufficiency and florinef/midodrine for low blood pressure. I checked with my pharmacist and they told me they contacted the manufacturer to make sure it was.

      3. My fiance does eat gluten, but we have seperated the kitchen. I have my own everything and we are strict with it. I do admit that I will kiss her without her brushing her teeth, so I likely have some mistakes, but we try our best to keep it safe.

      4. Well my GP called me to let me know that my reticulocyte count was low again and at the same time she noticed my blood work came back from my Gastro doctor. She left a message with him to call me next week about it. I will likely have an appointment in the 2-3 months and he will might suggest that. In Canada health care works at one speed, slow, so it might take awhile. I'm waiting to see a Hematologist about the retic count as well, so I hope to get some answers soon.

      I know the only reason it would go up is for gluten sneaking in, so I am frustrated since I've worked so hard in the last 2 years. As you know, life is not always easy getting used to it and being strict with it. I never would of thought my TTG would go up since I eat fresh whole foods for every meal except breakfast where I like cereal. I am a boring guy, so sometimes I eat the same meals every day for weeks to make life easier and not risk any CC. I felt that I was doing great because I didn't have stomach problems anymore, so I was shocked and disappointment in myself. Is it normal for TTG to go up so much in a short time because I thought TTG was in line with intestinal damage and if mine was Marsh 3B at 26, 186 must be worse. Also how would my stomach issues go away and my TTG get higher? I know nobody can answer all my questions and hopefully my Gastro will give me some help soon. I just wanted to see if anyone else had this happen to them. Thanks a lot Raven, I appreciate it!
      • 0
    12. alevoy18 added a topic in Celiac Disease - Post Diagnosis, Recovery/Treatment(s)   

      Need Some Advice
      Hi everyone, thanks in advance.

      To keep this short, I was diagnosed in 2009 with Celiac disease by positive anti-tTg IGA and positive biopsy. My tTg at the time was 28 (range 0 - 10) and my biospy put me at Marsh IIIb (moderate villus atrophy). My blood test at 1 year had my tTG up to 40 which was a disappointment, so I restricted my diet down to mainly whole foods. The only processed foods I eat are gluten free cereals from my health food store. My most recent test showed that my tTG was now 190!!!! How can this be in one years time??? I also have been dealing with on and off mild anemia. My reticulocyte count has also been low consistently, so I may be going for a bone marrow biopsy. In the end my question is how can the tTg go up almost 5 times the original value in one year when I've restricted my diet over that time. Even if I accidentally got CC'd here and there, I don't see how it could change so fast. I am just worried about having elevated levels as I want my risk for other health issues to go back to normal. Also I am confused as to why my stomach issues have improved. Since going gluten free I no longer have any bowel issues. My bowel movements are normal, my gas is gone and all seems fine. My only issue is 20 lbs weight loss in the last 6 months and fatigue, but no stomach problems. Anyways, any advice is appreciated!!!

      Thanks everyone!!
      • 5 replies
    13. alevoy18 added a topic in Celiac Disease - Post Diagnosis, Recovery/Treatment(s)   

      Low Blood Counts
      Hi, I was diagnosed by ttg/biopsy about 1 and a half years ago. I have been strictly gluten free ever since. Recently at my physical I had a blood test come back showing:

      RBC: 3.99 (normal 4.4 - 6.0)
      HB: 120 (normal 140 - 160)
      HCT: .34 (normal .40 - .50)
      WBC: 3.8 (normal 4.5 - 11.0)
      Absolute Neutrophil: 2.0 (normal 1.8 - 7.0)
      Absolute Lymphocyte: 0.9 (normal 1.0 - 4.0)
      Plat: 170 (normal 150 - 400)
      ABS Retic: 7 (normal 28 - 80)
      All other results were normal, blood smear showed Normocytic & normochromic appearance.

      My GP wanted to send me to a hematologist, but the hematologist wanted a repeat test in one month because she said I likely just had a bad infection. My results are below. Nothing really changed too much, except my retic is higher, but still way to low if calculated as a corrected retic for the level of anemia. My GP said the hematologist had no real interest to see me before. My GP wont be able to see me about the recent results until June because she is away (I just got a copy faxed to me for own records). Do you think I should push the hematologist to see me if she still doesn't want to after seeing these results? Something doesn't seem right for a fit 25 year old male to have low counts, especially since nutritional deficiencies have been tested and ruled out (the blood smear also was normal). Any suggestions of what it can be or experience is appreciated!! Thanks!

      RBC: 4.01 (normal 4.4 - 6.0)
      HB: 122 (normal 140 - 160)
      HCT: .36 (normal .40 - .50)
      WBC: 3.4 (normal 4.5 - 11.0)
      Absolute Neutrophil: 1.8 (normal 1.8 - 7.0)
      Absolute Lymphocyte: 1.0 (normal 1.0 - 4.0)
      Plat: 185 (normal 150 - 400)
      ABS Retic: 37 (normal 28 - 80)
      All other results were normal, blood smear showed Normocytic & normochromic appearance.
      • 1 reply
    14. alevoy18 added a topic in Celiac Disease - Post Diagnosis, Recovery/Treatment(s)   

      Enlarged Spleen
      Hi Everyone,

      I was diagnosed by tTG blood test and positive biopsy (Marsh 3B) in November 2009. Over the last couple of years I've had a few ultrasounds, due to finding lymph nodes in my neck/armpit. Prediagnosis I had a Ultrasound that showed my spleen as 11cm long. 6 months later after going gluten free, I had another ultrasound which showed my spleen was still normal sized at 10.6cm long. On my most recent U/S (Feb 2), my spleen was 14cm long and listed as mild/moderate splenomagly.

      Has anyone experienced this? I have had issues with my RBC/HB/HCT counts being borderline low for the last couple of years and my reticulocyte (immature red blood cells) counts being extremely low. I saw a hematologist, but they were not concerned until my red cells dropped lower. I'm just curious if anyone knows what the enlarged spleen is likely from or if I should see my doctor about it. A specialist ordered the U/S for the lymph nodes, no nodes were found in the abdominal section, just the spleen size. Is the spleen something that needs to be investigated or do I not need to bring it up to my family doctor?

      As for the lymph nodes, last check the largest in my neck was 2.0cm x 0.8cm and the largest in my right armpit is 3cm x 1.5cm. The biopsy of the armpit had a damaged specimen, so I am awaiting to see if I need another one. This is all likely nothing since my CBC tests are only borderline low, but I would like a bone marrow biopsy to ease my mind. Does anybody agree with the biopsy being done or am I just worrying too much?

      Thanks a lot!
      • 3 replies
    15. alevoy18 added a post in a topic Confused With Recent Labs   

      Thanks again for the reply. I didn't know about the airborne issue. My fiance is on a gluten diet, but we have seperate everything. I do cook for her sometimes though, as I made her cookies today actually. I will have to remind myself of this in the future. Thank you both for the tips.

      I never had my antigliadin antibodies tested originally, I just had tTG and then the biopsy. Here are all the tests I've done and the order:

      Nov 2009
      tTG 60 (range <20)
      biopsy (Marsh 3B)


      Dec 2010
      tTG 56 (range <20)
      Total Serum IGA/IGG - Both normal

      Jan 2011
      Antigliadin IGA 11 (range <20)
      Antigliadin IGG 23 (range <23)

      I would think if my tTG is still high a little over a month ago, my anti IGA should be high as well. Also if I was still getting gluten in there, wouldn't the IGA be up as well since I am not IGA deficient? Also since even my IGG is not too high, just a little bit, why would my tTG still be triple the normal? Sorry, I just wanted to brain storm and get some ideas to why. Thanks a lot.
      • 0

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