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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 DChelleD

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  1. Just wanted to come back and update. I got my results on Tuesday (nearly 2 weeks after the draw). I should have received them a few days earlier considering the specific lab that was doing the test said they have a pretty reliable turnaround of 8-9 days, but my Dr’s office was closed for a long holiday. In any event, my HLA gene test results were negative. I don’t have the written report yet but the nurse should be mailing it to me. I am very relieved to finally have a clearer answer as far as true Celiac or not. Regardless, I know for absolute certainty that I am gluten intolerant. Considering all that I mentioned in my original post and the fact that it appears to me that my RA is starting to act up after my gluten challenge (bloodwork a week ago shows RF is up but CCP is still down so staying off meds for now other than Ibuprofen), I am self diagnosing NCGI and will commit myself to a strict gluten-free diet. As far as my kids, I can rest a little easier now and not have to constantly worry about whether or not they have or can develop celiac disease. On the other hand, I'm sure I'll find something else to worry about with them. For instance, I still can't explain why they are much smaller/skinnier than their peers, including their cousins whose parents are shorter/smaller than DH and I.
  2. I believe the Gastroscopy and Endoscopy is the same procedure. Just called by different names. In the US it can be called simply Endoscopy, Upper Endoscopy and EGD (esophogogastroduodenoscopy). All the same procedure. The accuracy of procedure depends on taking a decent amount of biosies from several areas. The damage they are looking for can be patchy.
  3. Appletree, I mean that I can not get the results directly from the lab. My state (Florida) does not allow the lab to provide me with the results at my personal request, nor can I partcipate in any app/service to get results sent to me directly. I was unaware of any option for the doctor to give authorization for me to receive a duplicate copy. I will have to check into that for next time. I usually get a call from the nurse with results and doctor instructions and then I go by and pick up a copy.
  4. I have no patience and will drive myself insane waiting for the phone to ring with my results. Blood draw was on Wednesday at noon. Anyone have experience with Quest Diagnostics' (in the US) turnaround time for the HLA Typing for celiac disease gene testing? How long does it typically take to do the test? I wish my state allowed me to get the results directly, but no, only the doctor can release it . By the way, I had my family doctor order the test for me since my insurance will cover it 100% and I would have had to wait until November to see a GI doctor. My family doctor was not familiar with the HLA testing and was hesitant to order it, so I brought her Quest's explanation of the test and their test code ordering info. Big help! She agreed and wrote up the request form. Why I chose to go with the HLA Typing for celiac disease test: I've had the celiac panel done (in 2006 and then again recently) and biopsies taken (in 2006), but I have doubts with the accuracy and the doctors knowledge of celiac at the time. Rather than continuing a gluten challenge and repeating the celiac panel or EGD, I decided to just go with the HLA testing and let that be my determining factor with how I continue. I myself will be gluten-free indefinitely regardless of the results. I KNOW I am intolerant and Allergy IgG testing shows high “allergy”/intolerance to wheat, rye and gluten (among quite a few other foods). This challenge has really taken a toll on me. Besides my increased GI, skin, fatigue, brainfog and hair loss symptoms, I think it also caused an RA flare and my blood glucose has seemed a bit on the higher side lately. I had gestational diabetes 14 years ago with second child and prediabetes 3 years ago with third child. My BG returned to normal after the pregnancy but given it has been three years and I’ve had some recent symptoms of what I used to get with high BG, I just had a recheck along with a recheck of my vitamin D (deficiency was found a year ago, brought back up with high dose tablet then switched to lower dose for maintenance for the past several months). Both tests came back in normal range. A1c was 5.3 so not in “prediabetes” range but still think it is a little higher than it needs to be. I don’t want to risk a prolonged gluten challenge pushing me over. So, I am pretty confident that my only choice is to go 100% gluten-free. BUT, I have 3 kids who are all on the small side. All of them have always been on the lowest (and sometimes fell off) the standard growth chart. My older kids are on the later end of puberty and they all have occasional tummy troubles and other minor ailments. I have other family members who have GI problems too. I just need to know if I do carry the celiac disease genes then I know to keep a closer eye on my kids and have them screened from time to time and notify my family who may want to look into it for themselves. If no genes, then maybe I can relax a little. I hate waiting…..
  5. My bloodwork showed my total IgA at 67 range is 81-463 Allergist said my IgA was low but clinically insignificant. I did not get to talk to him directly and don't plan on any further visits with him. I just want to know what constitutes an IgA "deficiency"? My number is low but does it have to be low to a certain point to be considered a deficiency rather than just low? Or, is anything below range considered a deficiency? Will a gluten-free or gluten-light diet affect the total IgA bloodwork?
  6. Stri8ed – thank you for the tip on the test and the link. I am looking for all the info I can get. I never considered leaky gut until I had the IgG allergies and started researching it and leaky gut kept coming up. Renaye – It doesn’t seem that many traditional doctors consider leaky gut to be a clinical finding, unfortunately. I did some local searches and have found that many Chiropractors also have holistic/alternative medicine practices (or “Wellness Centers”) that consider and treat leaky gut syndrome as part of their whole body “wellness” plan. Sounds like you found the same. Unfortunately, my insurance doesn’t cover ‘alternative medicine’ and I would have to pay for it out of pocket. $175 for first visit and $50 – $150 for each follow-up with going a couple times a week and tapering off. I can’t afford that right now, so, like you, I will have to try to deal with it myself. I also see a Rheumy for Rheumatoid Arthritis. I go back to her in a couple of weeks and will mention it to her and see what her take on it is. Maybe I can see if she will order the lactulose/mannitol test. It doesn’t hurt to ask. Cyclinglady – thanks for the tip on tea tree oil. I’ve heard of that remedy but never tried it. I won’t use the systemic stuff because I just don’t want to risk side effects. I’ve tried the OTC stuff which does absolutely nothing. For several weeks I treated with apple cider vinegar soaks and applied vicks vapor rub. The vicks pretty much killed the nail and sort of detached it from the nail bed so I had to keep trimming them back really far. They grew back in an appeared fine but it wasn’t too long before the fungus came back.
  7. tTG IgA <1 value <4 IgA 67 range 81-463 (low) tTG IgG 4 value <6 Prior to testing I was gluten light for several months to gluten-free for 3 wks to gluten light for 3wks to gluten heavy for 2 wks Any thoughts?
  8. I've only really heard of Leaky Gut Syndrom for about a year. Before that I thought it was some kind of slang term used when someone had diarrhea. I am seriously considering this as a possibility to all my suffering but I'm not sure where to find a doctor who is knowledgable with Leaky Gut. I've dealth with GI problems most of my life. 7 years ago I had 1 blood test + the rest - for celiac disease but biopsies were negative. During that same time I was DXed with rheumatoid arthritis (actual DX is pauciarticular juvenile rheumatoid arthritis - I had symptoms dating back to my early teens that all my Drs missed). I've been back and forth between gluten-free and gluten-light over the years. A few months ago I had a couple of back to back sinus infections and the walk-in med care center suggested I do allergy testing (which they just started doing in their office). I have some environmental allergies I am getting weekly shots for (none are really too bad though) and my IgG food allergies came back with several foods I am "allergic" to. Severe level: Flaxseed; High level: wheat, gluten (no surprise to me), rye, rice, soybean, carrots, cows milk, peanuts; and Moderate level: beef, scallops. I had some in the mild range as well. My GI problems include alternating D and C, severe cramping (near the point of passing out), narrow stool with frequent change in consistency and color, gas, bloating, gurgling, fluttering, burping, flatulence, acid reflux, indigestion and burning in the stomach, inability to wipe clean, fecal incontinence, a LOT of mucus and sometimes bile (or that thick dark yellow liquidy stuff), hemorrhoids. Other problems: nail fungus on both big toes, brittle/thin nails, yellowish teeth, hair loss, itchy scalp and skin all over (but no rash), foggy brain, terrible memory, can't focus, fatigue, anxiety, depression, headaches, occasional migranes, joint stiffness and pain. I just recently went on a heavy gluten challenge to do another celiac disease panel. But I was gluten-light for a long time and then gluten-free for about 3 weeks, gluten-light for about another 3 weeks and then went gluten-heavy for 2 weeks before doing bloodwork. BW came back negative, but with a low IgA ("minimally low, no clinical significance"). I'm not sure if I want to bother with another GI doctor to go foward with more celiac disease testing or find someone who specializes in Leaky Gut. I did a quick search in my area on leaky gut and pulled up a few chiropracters/wellness practitioners that test/treat for it. What kind of "doctor" should I be looking for?
  9. Grrr! I got a call from the Dr's office this afternoon. But all she had was a "message" from the Dr that my Celiac Panel and my IgE flaxseed allergy tests both came back negative. "Oh, and your IgA was minimally low, but clinically insignificant so there is no need to be concerned." I asked for the values. She said she didn't have my actual report because the Dr hasn't released it yet, she only had his message. So I requested to pick up a copy tomorrow afternoon. Ugh! This sucks! I was all prepared to accept a negative result based on my gluten intake possibly not being quite long enough to get an accurate reading. But she just had to say "low IgA" so now I'm questioning the accuracy of this blood test AND the testing I had done 7 years ago. I'm not even sure WHAT tests they performed. The lab's website under the test code says the main test is the tTG IgA and IF that test is positive then they do the Endomysial AB IgA test, IF that is positive then they do the Endomysial AB IgG test. They also do the total IgA and IF that less than the lower limit THEN they do the tTG IgG. I guess I will have to wait until tomorrow to see what tests they actually did and obsess over the values. I will be sure to update and see what others here think. How "low" does the IgA need to be to affect the accuracy of the testing? Regardless of what the blood tests say, I am leaning towards remaining on a gluten intake (2 slices bread daily) for 3-6 months and going to another GI. I would like to get the endo-biopsies at least one more time before I am comfortable enough to rule out true celiac disease. I may also request the genetic testing at that time too. I'm just a person that has to know for sure. This time I will be sure to do some research to find a Dr in my area experienced with celiac disease/NCGI and Leaky Gut. I also suspect I may have a Leaky Gut problem too.
  10. Thank you for your reply. I went ahead with getting the bloodwork done. The Dr who ordered it was an Allergist and I was also having some bloodwork done for a possible IgE flaxseed allergy. It was sort of on a whim to get the celiac panel done right now so its not a one time shot. I've been waiting to get some finances in order to go back to a GI doctor, so even if this test comes back negative and I still feel strongly about it, I will probably eventually get it done again but I will be sure to be on gluten for longer and possibly request to have the genetic testing done as well. Besides my GI symptoms, there are several other factors that keep briging me back to celiac disease. For starters, when I had the original celiac disease testing done, I also had a positive ANA which sent me to a rheumatolgist who diagnosed my rheumatoid arthritis. Having one autoimmune disorder increases my risk for having another. My daughter also had a titre come back positive but her biopsy was negative. Last year I saw my Dr about my anxiety, depression and foggy brain issues who did some bloodwork and found I had a vitamin D deficiency. I just want to know for sure if I truely have celiac disease and need to be on a strict gluten-free diet or if it is NCGI then maybe I can just go gluten light. The tests I had done in 2006 were: Gliadin Antibody (IGA) <3 Gliadin Antibody (IGG) > 24 value (same for both) <11 negative, 11-17 equivocal, > 17 positive My endoscopy showed a hiatus hernia but everything appeared to be normal. I dont know how many biopsies they took. The report says "Normal stomach. This was biopsied.; Normal stomach. This was biopsied.; Normal examined duodenum. This was biopsied." All the biopsies came back normal other than some "non-specific" inflammation. I will keep you posted whenever I get my most recent results back. Thanks again for taking the time to respond.
  11. I'll try to keep it brief - I was tested for celiac disease several years ago. IgG titer (can't remember specific name) came back positive, but biopsies appeared to be normal. No celiac disease diagnosed, just a sensitivity. Since then, I've been back and forth between full gluten and limited gluten diets. By limited, I mean that I chose gluten-free when I could but I did not worry about cross contamination or trace amounts and I allowed myself a cheat here and there. I would have a few bites of pasta, a slice of pizza or a couple of cookies every few days or so. I went gluten-free for 3 weeks because I had IgG allergy testing that showed a wheat/gluten allergy, but then I just ended up going back to a gluten limited diet. I saw a allergy/immunology specialist to find out more about the wheat/gluten (and other various food) "allergies". His opinion was that the type of allergy testing that was done (by a different provider) was more indicative of an intollerance rather than a true allergy. He recommended that since I do already have RA and every GI symptom (besides bleeding) there is, that I should go ahead and repeat the celiac panel. He recommended I go full gluten for 2 weeks before doing the bloodwork. It has been a little over 2 weeks now, I have had a LOT of gluten filled meals. I have something with gluten in it several times a day. Digestively, I have been paying for it dearly. I'm just curious to hear opinions about going forward with the blood test after going full gluten for just 2 weeks? I've done a little reasearch and know that some recommend at least 6wks and some say 6mos, but those recommendations are for after being strict gluten-free, whereas I was just limited. Thanks!