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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 concernedmamma

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

      Which Multi Vitamin Is gluten-free?
      I am just less than a month gluten-free after positive BW and scope/biopsies. I am looking for a multivitamin that is for sure Gluten free and am having troubles finding one! I know brands are different between US and Canada, so just to let you know I am in Canada. I found one that said Wheat Free but not Gluten free, so I don't feel comfortable with that. Others just don't say anything! The ingredients look ok, but I don't know what half of the stuff is, and I can't find one that says clearly Gluten Free. Jamieson Brand has many single vitamins and supplements that are labeled as Gluten Free but I couldn't find a multi vitamin.

      What do you take?
      • 10 replies
    2. concernedmamma added a post in a topic 3 Weeks - No Difference   

      It sure is frustrating! We were just talking about this this evening. Our son was diagnosed in March of 2010 via Blood work and endoscopy (at age 5)- After lifelong diarrhea, etc.

      His blood work was down to 'normal' within 6 months, but we kept seeing what we thought were 'reactions' and were so frustrated as we thought we were messing up!! Only in the last few months has he been more 'normal'. We have now had at least 2 months of NO diarrhea! Woo Hoo!!! THis is16-17 months post initiation of a gluten-free diet. Of course, tonite, he accidentally took the wrong plate of pizza and took a bite before we could stop him.(our fault- we had 4 extra kids over, it was chaos and we weren't careful). Within 20-30 minutes he threw up once (new symptom) and had diarrhea and tummy pain. I can only say this to those that 'understand'- but this was good for us to see! This is THE very first clear episode of glutening we have ever had. I think he has finally healed and we can now know when he is reacting to something.

      Healing can be slow, but it DOES occur. Keep strong and know you are doing the right thing for your body.

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    3. concernedmamma added a post in a topic Me + Non Gluten Free Family= How?   

      Hugs to you! I am speaking from the other side, but I can empathize a bit- my son is Celiac. When he was diagnosed, everyone else was eating regular food. It will be a bit harder for you in some areas as you are preparing the food for the whole family, but pick and choose the things you are willing to change for everyone or not. We have a 'clean' area of the kitchen- the far side of the stove. NOTHING gluten may be put there- not a spoon, not a packaged cookie- NOTHING. The majority of our suppers are gluten-free- rice, potatoes are naturally gluten-free. So are all vegetables and meats in their natural state. Pick and choose your seasonings and sauces and really, the changes there are minor. The gluten-free pastas are not that bad- we have made the total switch and I don't mind them at all.

      Breakfasts may be a bit tougher, but they can have their cereal and bread and you have yours. You do need your own toaster, or I have heard of toaster bags.

      We have one pot, that is for the Gluten food- it is black, the rest are stainless steel. We have one drawer/holder for the hard to wash utensils that are gluten-free i.e.) whisk, strainer, etc. We do not have second sets of everything. Others will differ with us, but we haven't found it to be necessary. Utensils- fine in the dishwasher, most cooking utensils, fine. We do have clearly labeled separate margarine containers. All other containers it is well known to all that you scoop out with a clean spoon, then spread on your gluttony bread.

      I would suggest not baking with regular flour- it is impossible to make sure you don't get sick and cross contaminate your whole kitchen.

      Pot Lucks suck. Bring your own meal. Things like fruit and veggie trays should be fine- but try to serve yourself before anyone else gets there.

      Since my first son was Dx in May of 2010, my second son has been Dx in August of this year and now my blood work is positive. I am choosing to do the endoscopy and will have that in less than 2 weeks. It appears that exactly 50% of our family is Celiac right now.

      Good luck to you- this is completely overwhelming in the beginning, but honestly, it does get better and easier and you will find your groove. We re-organized and arranged our kitchen 3 or 4 times before finding what works for us. You will figure it out as well.
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    4. concernedmamma added a post in a topic Why Do Some People Feel They *must* Have An Endoscopy?   

      I haven't read through all of the replies, but wanted to give you an alternate view.

      Both my boys have Celiac. One DX through positive blood work and a scope (because that is what we were told to do and I just wanted my 'baby' to feel better, so that is what we did). He had had many health concerns prior, honestly we are only now starting to see improvement, over a year and a half later.

      Son number two had positive blood work a year later. By this time I was more educated and opted out of the scope for him. He has very few/questionable symptoms, and so far, 4 months in we are seeing little change.

      Now my blood work has come back positive. I have not had symptoms that I would make a clear connection to Celiac. I initially was not going to do the scope, and went gluten free for one week. it was then that I realized that to completely 'buy in' to the idea that I had to remain gluten-free life long (even if I don't see any positive changes) I would need to KNOW that eating Gluten was doing actual damage to my body. Also, there is a bit of a tax break here in Canada and I was told that the adult GI would not definitively diagnose me with out a scope. So now I am back on a Gluten filled diet and my scope is booked November 15th.
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    5. concernedmamma added a topic in Celiac Disease - Post Diagnosis, Recovery/Treatment(s)   

      How Many People Were Ok Before Diagnosis?
      Hey there!

      Just wondering how many out there were NOT ill prior to diagnosis- and now that you are gluten-free, how have things changed? I got my BW done since my two boys were diagnosed with Celiac- about a year apart. I finally went, just so it would stop hanging over me as 'something I should do'. Feel fine, no obvious symptoms. My blood work came back strongly positive. I have decided to go forward with the biopsy since I think, down the road, I will need to know there was damage in order to stay loyal to the diet.

      So, my question- if you weren't ill before diagnosis, how do you feel now that you have gone gluten-free? Did you get the biopsy? Even though you weren't ill, was there still damage on endoscopy?

      Thank you!
      • 15 replies
    6. concernedmamma added a post in a topic Did Everyone Have A Biopsy To Determine Celiac?   

      Nice to read this! We have a strong family history of Celiac, so when my blood work came back strongly positive, I assumed I would skip the biopsy/scope. The GI strongly encouraged it though, and I realized that 'I' need the positive scope to prove to myself that Gluten is doing damage to my body. I have felt fine, but did the blood work since we have Celiac in the family. Scope is booked for Nov 15

      I am extremely nervous though! Those who had it done- were you asleep? I don't want to be awake or even just a bit sleepy when they put a tube down my throat!
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    7. concernedmamma added a post in a topic Funny Things Our Kids Say   

      When we told the boys (my boys are Celiac, so far girls are not) that it looks like Mommy is Celiac as well, the first question: "does this mean WE get the big toaster now??"

      So cute.
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    8. concernedmamma added a topic in Celiac Disease - Pre-Diagnosis, Testing & Symptoms   

      How Necessary Is The Biopsy?
      I am trying to understand this, but perhaps a bit of my history would be helpful to you..........

      Late 2009- Sister had odd GI symptoms, blood test positive for Celiac. Her dr discouraged biopsy. She had improvement with gluten-free diet
      March 2010- My son had positive blood test for Celiac. History of lifetime diarrhea, bloated belly, pale, and more recent to diagnosis, starting to fail. Biopsy Positive.
      August 2011- Second son positive blood test for Celiac. I requested no biopsy- Pediatrician agreed.

      I do not have any symptoms (that I am aware of), but I wanted the blood work done to be sure. just found out (Friday) my blood work is also positive (Anti-transglutaminase was 98 or something, with our norms reported as less than 10.) I am working on the assumption that I have Celiac Disease. Immediately went gluten-free, assuming I would NOT do the biopsy. With such a strong family history and obviously positive blood work, I was confident that 'my' diagnosis was correct. Met with my GP today. I do not respect, nor trust him, but cannot find another one in our area. He was less than educated on Celiac, and very confused as to why I would even subject myself to a gluten-free diet if I was feeling ok and 'could eat gluten and feel fine'. He gave me the impression that to receive a formal diagnosis (and therefore a tax break-Canada), GI's would require me to have the biopsy........... ALSO....... that it could take up to a YEAR to even get in to the GI. He could not understand why I was concerned about subjecting myself to gluten for the next YEAR if I was truly Celiac. Soooooooo..............

      What are the chances of having such a strong family history of Celiac, positive blood work and NOT have Celiac???
      Is it worth subjecting myself to Gluten until I get into the GI?


      • 4 replies
    9. concernedmamma added a post in a topic Celiac Daughter Looking For Pen Pal   

      I suggest posting this in the parents of kids/children with Celiac Forum!!
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    10. concernedmamma added a post in a topic Stress Making Things Worse - Ibs   

      I am interested to hear more about this-Both my son's (6 yr old non-identical twins) have Celiac and with one of them, we are sure he is reacting to 'something' but can't figure out what it is. We were thinking his 'bathroom episodes' and complaints of tummy cramps were related to cross contamination (about 1-5X/month). Well, last month, accidentally, we served him a regular pizza rather than the gluten-free one......... a week later......... NO reaction!!! So, my thought process is, if there is no reaction to an entire pizza, then these episodes are not related to gluten!

      IBS has been suggested to us, but, like a previous poster, I don't really believe in that diagnosis- it seems to get handed out simply because the medical professionals don't know what else it could be!

      We started a food journal to try to figure this out, but perhaps we need a stress/activity journal too.

      Do you all see any correlation with heat? He had quite a few D episodes on the hottest days this summer. Just wondering......... (they also tended to be our busiest, least healthy-eating days-although always gluten free)

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    11. concernedmamma added a post in a topic How Long For A Reaction?   

      Well, just a quick update........ no GI reaction AT ALL. We didn't tell them that we had made a mistake. Didn't want to cause undue anxiety. Bathroom events have been 'normal', no complaints of headache or tummy ache. Yesterday Jacob was super tired and emotionally sensitive, but that was several days after the glutening episode, so hard to say if it is related or not.

      Very weird. I am confused now.
      • 0
    12. concernedmamma added a topic in Celiac Disease - Parents of Kids or Babies With Celiac Disease   

      How Long For A Reaction?
      Okay. So tonite, we made a HUGE mistake and grabbed a bag of pizza crust from the freezer, made the boys their pizzas and watched them chow down........ then looked more closely and they were eating WHOLE WHEAT pizza crusts!!!!!!!! They were over half way done, we figured the damage was done and let them finish their pizzas.......... Now we are waiting for the blow outs...... literally.

      Gotta say I am surprised, though- they ate around 6pm, went to bed around 830. It is now 10pm and no complaints of tummy pain, no trips to the bathroom. How long does a reaction take? I am confused because there are many times that we think Jacob is reacting to something- due to diarrhea, complaints of tummy pain, etc. However, it must be traces as we are very careful about his food, cross contamination, etc. SO, if he hasn't had ANY reaction to speak of so far after eating whole wheat pizza, are these episodes of diarrhea and tummy pain really related to gluten? Or could it be some other food reaction.

      Please don't get me wrong- i KNOW they can't have gluten. I KNOW reactions can vary. I am not using this as an excuse to feed him gluten or become lax on his/their diet. Just wondering if what we thought were gluten reactions may be something els. Also wondering what is a 'typical' length of time between eating gluten and symptoms.

      Kim, Momma to 4 wonderful kids-Rebecca (age 7, two negative blood tests, no symptoms), Jacob- (age 6, celiac blood work positive, confirmed by biopsy March 2010), Gabe (age 6, Down Syndrome, celiac blood work positive July 2011, mommy refused the biopsy), and Susanna, (age 2, no testing, no symptoms)
      • 5 replies
    13. concernedmamma added a post in a topic Just Sick Or Glutened?   

      It is so hard when our little one's are unwell- trying to figure it out can be such a challenge. I usually *hope* for a fever (sounds bad- but you know what I mean-fever=sick, not gluten-horray!). Other signs I look for- for my son, headache+stomach ache+diarrhea=gluten. One all on its own is a bit harder. Also, for us, he is unlikely to eat if his symptoms are related to gluten. Is anyone else in the house sick with similar symptoms? Were there any opportunities for cross contamination?- such as regular toast crumbs on the table, then on his hand to his mouth, a new food, etc.

      Sometimes, we just don't get to figure it out. Good luck to you!

      • 0
    14. concernedmamma added a post in a topic How Definitive Is The Blood Test?   

      My son had fairly low numbers (13 or 15, can't remember) and his biopsy was scored 3, on a scale of 1-4. The numbers DO NOT relate to damage or sensitivity. He is EXTREMELY sensitive as well.

      • 0
    15. concernedmamma added a topic in Celiac Disease - Parents of Kids or Babies With Celiac Disease   

      I Hate Celiac Disease!
      One of my boys(Jacob) was diagnosed with Celiac in March of 2010....... positive bloodwork and biopsy. It has been a challenging year. He is EXTREMELY sensitive! School (kindergarten) resulted in many episodes of cross contamination, and many tummy aches, diarrhea and headaches for my boy.

      Today we found out his twin brother (Gabe) also has Celiac. This sucks!!!!! We had a mixed house before, but will be going 100% gluten-free now. To make matters even more challenging, Gabe has Down Syndrome. At this point, he won't understand why all his favourite foods are now off limits. He is a skinny little guy, a very picky eater. What has put my mind at ease is that he will eat peanut butter toast in the morning- or all day if I would let him. He LOVES bread, toast, buns, etc. We tried giving him gluten-free bread/toast before and he did not like it at all! He is a large part of the reason that we maintained a mixed household.

      I am not a happy momma. I just feel sad for all of the food challenges and choices that they will have to make in the future. I know there is way more available to them now than ever before, but this still bites the big one.

      Thanks for letting me vent.

      Kim. Mommy to 4 wonderful children- 2 girls age 7 and 2 and twin boys aged 6.
      • 14 replies

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