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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 nw0528

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    1. nw0528 added a topic in Celiac Disease - Pre-Diagnosis, Testing & Symptoms   

      Ped Gi Appt On Monday - Gene Test?
      Hello (again) I was part of this group a little over a year ago when I was suspected of having Celiac, but turned out (endoscopy/biopsies) to not be celiac, but gluten sensitivity and SIBO (small intestine bacterial overgrowth).
      Now, I'm 3 year old son has had ongoing severe diarrhea for six months. Just found out the bloodwork oordered two months ago by our ped and then sent to a GI which included a celiac panel did have a component that was POSITIVE, while I was told he was negative by the GI. (Yesterday I saw the test results and for one section it said, "consider patient positive for celiac." Both my ped and I are furious that the GI never mentioned this. (Long story, just after the test was done, son got an intestinal blockage which has just now resolved.) Anyhow, we were referred to a different ped. GI (actually was mine as a kid) whose nurse called to say that he wants to see my son Monday.
      I want to ask for a gene test for celiac. Does it have a specific name when done through a doctor/hospital lab, that I should know when I ask for it?
      Am I correct in thinking that
      0 gene = no celiac possible
      2 genes = celiac
      1 gene = possibility person could develop celiac
      Currently he continues to consume gluten as we are hoping an endoscopy will be done in the next few weeks so we will know for sure.
      • 1 reply
    2. nw0528 added a topic in Celiac Disease - Parents of Kids or Babies With Celiac Disease   

      Back Again (This Time For My 3 Year Old)
      I was a member of this group about a year ago when I was being tested for celiac. My bloodwork and endoscopy/biopsies were all negative for celiac. However, there seems to be some level of gluten sensitivity, as when I reduce the amount of gluten in my diet, my GI symptoms (severe IBS) are considerably better.
      Now, here I am back again, because my 3 year old son may have celiac.
      In November, around his 3rd birthday, he started having large volumes of liquid stool each day (two - four PINTS of liquid stool) and making anywhere between 8 and 20 trips to the toilet each day. We did stool samples for parasites and bacteria (negative), eliminated milk, and then all dairy (no improvement), eliminated all juice and citrus fruits (no improvement) and did bloodwork and an xray. Unfortunately, at some point during this time, my son became slightly constipated and a ped. GI put him on laxatimes, which did not work and he ended up with a complete blockage four weeks ago which we resolved at home with enemas (followup xray shows blockage gone). He is being weaned off the laxatives the GI had him on and we are switching GIs because today, at our ped. appt. to discuss seasonal allergies and the ongoing GI issues, the ped. pulled out the bloodwork results (from MARCH) that the GI had sent him and said, What about this part of the celiac panel that came up positive for celiac??? HUH? the GI told me just last week the celiac bloodwork had been fine/negative. My ped. showed me the report and it said across from one number, "consider patient positive for celiac disease." All the other parts of the panel were fine. Could be lab error - at the very least we will be repeating it (when we get to our new GI).
      So right now we are weaning off of the laxatives, and waiting for the new GI consult. If bloodwork again has a section that is positive for celiac, we will be going the endoscopy route to find out for sure.
      I am sure I am going to have a lot of questions to be posting in the coming weeks.
      • 0 replies
    3. nw0528 added a post in a topic Dr.'s Think I'm Nuts!   

      Did you have negative biopsies too?

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    4. nw0528 added a post in a topic How To Tell If Lunch Meats Are Gluten Free   

      Is your daughter on any type of health plan at school? I had a student several years ago with Celiac and her plan specified that she have a small fridge in the classroom (this passed from grade to grade with her) to keep her foods separate and also her mom kept it stocked with special treats so if someone brought a birthday treat with gluten or if someone sent in a special treat, then she would have one.
      I am not understanding how if you sent lunch meats yourself for your daughter, the school did not give it to her to eat. I would strongly suggest requesting a meeting with your child's teacher and school nurse. They can decide if it is necessary to involve the kitchen staff. If you are not satisfied with the meeting, then request another meeting with an administrator present.

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    5. nw0528 added a topic in Celiac Disease - Pre-Diagnosis, Testing & Symptoms   

      Trying To Figure Out Intolerance Vs. Sensitivity
      I understand there is a difference between having Celiac Disease and just having a sensitivity to gluten. I understand with Celiac damage is actually being done to the villi in the small intestine..
      I just had my gastroendoscopy and my GI said everything looked "FINE." I asked him if I had Celiac would he have seen it (damaged villi) and he said, no, not necessarily because it can be microscopic. (He took biopsies which I am awaiting the results of).)
      When my primary dr. first mentioned it sounded like I had Celiac Sprue, I went gluten free for one week. During that time I had tremendous improvement in my symptoms, but went back on gluten in prep. for the endoscopy. During the time I was gluten free, when I made errors (our soy sauce has wheat, for example), I had problems soon after those meals. Now, I have been having gluten free breakfasts and lunches (I'm a teacher and can't be racing to the bathroom all the time!), and then consuming gluten for dinner and evening snacks (pasta, pizza, etc.) and I have problems in the evenings.
      So, what I am curious about is are the symptoms different for gluten intolerance (celiac,) vs. gluten sensitivity? For example, oily stools, very frequent bowel movements, gas, etc.
      Thanks for your help!
      • 2 replies
    6. nw0528 added a post in a topic For Those Who Were Diagnosed After Having A Baby..   

      My symptoms started 20 months after having my son. (I also had preeclampsia, diagnosed at the end of my second trimester).

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    7. nw0528 added a post in a topic Adoption   

      Keep in mind the federal tax credit for international adoption is set to expire at the end of 2010. No guarantee it will be reimplemented with the current administration.

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    8. nw0528 added a post in a topic Adoption   

      My husband and I have a wonderful two year old biological son. We are in the process of adopting a baby (girl?) from China. We have waited one year already (that's after six months of paperwork) and have another year to wait. By next year at this time, we should be on our way to China.
      Our reasons for adopting aren't due to celiac or infertility. It is something I had wanted to do before I met my husband and he thought it sounded like something he would want to do also. I became pregnant a few months after we married and while my son is incredible and I love being a mom, I can honestly say for the majority of my pregnancy I did not enjoy being pregnant. (I had projectile vomiting for six months and not just in the morning, I was severely anemic and they could not improve that, I developed pre-eclampsia and was on bedrest for over three months.) For me, the complications of my pregnancy just confirmed for me that my desire to adopt a baby is the path for me. I know there are so many women who stuggle to become pregnant and carry to term, and I know I am so very fortunate to have a healthy baby boy. However, I believe my next baby is in China...
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    9. nw0528 added a post in a topic Pre-eclampsia & Celiac   

      Yes, they do have very specific medical info. they want. Your doctor has to say that you do not have any medical issues that would negatively impact your ability to parent. You are already a parent, right! I do agree that if you have not had a biopsy, then you do not have a true diagnosis which would need to be documented on the paperwork. And, even if you did, we are talking about a food intolerance here...
      I emailed you privately as our experience is different than most because my husband is Chinese. We have a "shorter" wait (2 years, vs. 3-5 if he were not Chinese).

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    10. nw0528 added a post in a topic Pre-eclampsia & Celiac   

      I am recently diagnosed celiac disease. I had pre-eclampsia with my son (first and only pregnancy) three years ago. The ONLY symptom I had was a very high protein level in my urine. I went on bedrest at 28 weeks with my doctors hoping I would make it to 30 or 32 weeks. I made it to one week PAST my due date and delivered a totally healthy 8 pounds, 14 ounce baby boy. Six weeks after delivery, zero protein in my urine.
      My OB/GYN indicated there is about a 5% chance of any woman developing pre-eclampsia. But, now that I have had it with one pregnancy, he said there was a very high likelihoood of having it again. (I'm thinking he said 50% or closer to 75% but I could be wrong.). I'm not willing to risk it with regards to another pregnancy. We are adopting a baby girl from China (should travel next year at this time).
      I had no idea there was even a possibility of preeclampsia and celiac disease having any kind of potential connection.
      Thank you for starting this thread. I'm fascinated!

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    11. nw0528 added a post in a topic gluten-free Fiber Supplement   

      Konsyl Fiber Laxative is gluten free. I'm thrilled about this because I have taken it for 24 years for IBS and took it while pregnant (says safe during pregnancy) and it has always worked great for me. So, needless to say I was thriled to see it is gluten-free!
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    12. nw0528 added a post in a topic Missed/late Periods After Going Gluten Free?  period yet, but I did find a pregnancy test (one left in the two pack from when I became pregnant with my son three years ago!) and took it and luckily negative. Guess I'll blame it on stress this time and the shock of my body changing from gluten diet to a gluten free diet and feeling perfect and then back onto gluten for the endoscopy. It must be pretty mixed up!

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    13. nw0528 added a post in a topic Missed/late Periods After Going Gluten Free?   

      Oh yikes! Let's hope not! He had the procedure a year ago, and "clear" samples (clear of sperm) within six months of that. Oh yikes!

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    14. nw0528 added a post in a topic Missed/late Periods After Going Gluten Free?   

      I'm only 34, so I doubt it would be menopause... I hadn't heard about premature ovarian failure.
      Wouldn't you know I just had my annual exam a month ago and besides being anemic and talking about my GI symptoms and possible celiac, there weren't any other concerns. Wouldn't you know my periods would go haywire after the appt.!
      Thanks for the website!

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    15. nw0528 added a post in a topic Heart Racing...   

      I had this symptom when I was severely anemic (to the point of almost needing transfusions). My heart would race and I would sometimes feel sweaty/dizzy. My doctor said I was having anxiety attacks. I told her I was not. She did bloodwork and came back severely anemic.

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