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We were finally able to recieve a copy of the family's genetic testing for my deceased sister's HLA tissue typing. It seems they did include DQ for my (living) sister with dermatitis herpetiformis and I who are both a perfect tissue match but apparently not for my other sibs.
According to the Histocompatibility Report we are (have?) DQB1 06:04 and DQB1 05:01
I believe it means we are DQ1/DQ1 (as explained by a nurse) and do not have the DQ2 or DQ8 markers associated with celiac.
Anyone have more explanations? Let me know if you need any other info off the report.
Thank you Skylark, I appreciate your kind words and also your comment about the stronger 'genetic test'. I have been able to relax about seeking more of that kind of testing and focus instead on the lifestyle I need to now live for my health and my children's future health.
I am crying reading this because I am so grateful for you and this community who ARE making it emotionally so much easier than I was afraid. I am turning to this forum on my down days when I am scared, and on my up days when I feel confident I can learn and adjust to something new. While I technically have probably still been exposed to gluten since I am only 3 months into it and not stressing too much about cross contamination, I am aiming to be %100 as soon as I can learn how and maintain habits that keep me there.
I worry if I am getting gluten I don't notice but so far the times I realize I goofed, I have definitely had symptoms. In fact, I was wondering today if feeling pessimistic about being gluten free might actually be an early sign that I was glutened because most of the time, when I am feeling good, I don't feel that being gluten free is so hard and I have more confidence that I can do it...with help of course!
HaHa I just read about the Chef and was trying to figure out how to get to the restaurant since I live in the same state! While I am lucky to have a husband who suggested the whole family be gluten free to make it easy on me....as if making enough gluten free bread to feed 9 people was easy! lol...I am realistic enough to know he will want his pizza and his donuts and his secret candy stash etc. and won't necessarily 'get it' completely.
After reading this thread I talked to him about the issues, so thanks for bringing it up...he suggested he would eat gluten free when we are alone for a date, but I would relax when we eat out with other people and he will pack a teeny toothbrush for after dinner.
For the second month in a row (gluten free 3 months) my cycle seems to have snuck up on me early. This isn't a problem because even though I have been very regular for at least 3 years now, it was usually longish, like 32 days. What it tells me is that being gluten free has been changing something. The best thing for me has been the near disappearance of sometimes severe pre-menstrual symptoms. I would feel the peak of manic anxiety and panic attacks near ovulation and almost two weeks of severe brain fog and the fight with feelings of alternating aggression/depression culminating in one sad negative night just before I finally found relief when my period started.
Tonight, while talking with my husband on the phone (he is out of town) I got a little weepy and felt a few moments of negativity. After I got off the phone I discovered I had started my period early. So a few moments of 'pms' was the only sign that my period was imminent.
Is it too much to hope that this isn't a fluke? Has anyone else experienced relief from PMDD going gluten free?
1971 was a good year for me too! Yes, the items I have chosen to keep I can thoroughly clean. I guess I was not sure if that was enough or if there would be a residue I couldn't see. Anything with a too tight place I can't get to is going to be replaced, like my rotary cutter. I only use disposable bags anyway so that makes that easy. I do have a cylinder tool that will be hard to clean but since it only had fondant in it which I have since found out was gluten free and I never used it when I was baking with flour, I think it is fine. Only used it twice anyway.
I started making cakes last year. I found I really enjoyed the decorating aspect, especially modeling chocolate. I found I might have a real talent for it (lots to learn and practice though) but I am not an enthusiastic or patient baker. In fact, discovering I have celiac a few months ago has been freeing because I no longer have the pressure to make cakes for people who were asking. For my sister's graduation I bought a costco cake(for the BBQ guests) and some gluten free cupcakes (she is also celiac) and used gluten free fondant decorations to personalize them. It was very enjoyable so I think I may skip the baking aspect altogether and not miss it but I want to keep decorating.
My question is, I have frosting tips, modeling tools, cutters, cutting boards and candy molds. I tossed the modeling sponges already and gave away my baking pans because they had a rolled edge I didn't trust. Can I wash these other things well enough to be gluten safe? Or do I need to start over with my collection? I wouldn't be entirely unhappy with doing that but my husband might... I am moving so it will all be packed at least 3 months until we find a new house, does that help?
Thank you faithforlife and congratulations on your pregnancy. My children are wonderful and their Dad has been very supportive. We have had all of them tested...so far all negative but I am suspicious because some have symptoms. As for genetic testing...I am not sure I understand about finding the risk levels of each one? How do you know that? With myself and 2 living sisters celiac and one who passed away from lymphoma/leukemia who also had autoimmune issues(possibly undiagnosed celiac?)...I was told by someone on this forum that was as good or better than genetic testing. Since the celiac testing has been negative I was thinking I would have the whole family be gluten free in the house but relax out? Except that there are thyroid concerns with one of them (myself and both my parents have Hashimoto's)so I am still worried about the best course of action.
I know there is an association between miscarriage and celiac but I don't understand the relationship.
About 5 years ago I suffered my first miscarriage (13 weeks) after 5 healthy pregnancies and 1 happy adoption. I was 36 at the time. I silently worried it had been caused by stress due to my sister's cancer diagnosis and taking care of her 3 babies along with my own.
Within 6 weeks I was unexpectedly pregnant again with my 7th child and carried him successfully to term.
Finally, a year ago this month I again suffered a miscarriage and subsequent hemmorrhage also at 13 weeks. It was during my examination for this event I was diagnosed with Hashimoto's thyroiditis but no one mentioned what might have contributed to the loss.
I am at peace with the number of children we now have and not planning any more, but I guess, with the anniversary here and now knowing I have celiac (3 months gluten free) I am wondering anew what may have happened and if it might be due to celiac in any way. I also have concerns for my son who was born in the middle of the two. Do I need to be especially watchful if I had celiac while pregnant with him?
Thank you, and if this is not the appropriate place to post this topic, please advise and accept my apologies.
I am completely new to celiac and gluten free diet (3 months) but shortly after I recovered from my initial adjustment symptoms, I started having pain exactly as you describe. This pain is different from being glutened for me too because I don't get the other symptoms along with it. I finally connected it to rice and quit eating it. I still have rice flour in products I buy because I am overwhelmed enough by all the changes but I don't seem to have the same pain, just when I was eating either white rice or, especially, brown rice. Maybe it IS the brand because it was stuff I had in the house from before celiac diagnosis and the gluten free products I have been buying are safer? I don't know but I someday I might be brave enough to try another brand.
I am sorry you are feeling so badly and I hope you find relief soon.
Thanks MitziG, now I just need to convince my parents to get tested....
I am a little confused still about non-celiac gluten intolerance. I have been understanding it to be on a spectrum that progresses towards celiac or can be triggered at any time? If not, then how know if she is 'safe' to eat gluten sometimes even when it makes her sick?
So, all my seven children have been tested for celiac as of last Friday but I have not recieved the results yet. Before testing, I was making sure they all were eating whole wheat sandwiches and other store bought bread products but I tossed all wheat flour and gluteny ingredients from the home. We ran out of bread a couple of days ago (after testing but before results) but didn't miss it because I was experimenting with gluten free baking.
So...my 9yo daughter is one of my children who I have been wondering about since I was diagnosed celiac. She is my picky eater, often complaining of stomachaches and headaches. After she ate her dinner tonight, within 10 minutes she came to me and said "Mom, I can't eat beans remember, they always give me a headache." Within 20-30 minutes she was sick in bed at 6pm with body aches and a throbbing headache and mild tummyache. Even though she has complained of beans before, I thought to check with Dad (a friend had brought dinner over while I was busy working on a project in another room) and realized she had eaten a whole wheat tortilla with it.
My instinct is to keep her far away from gluten but do I need to continue giving her bread in case we need any further testing?
Thank you MitziG, I realize I may have caused some confusion. 13yo son is the same one I was originally talking about in this post. He is the first of my seven children, all ages, who will undergo testing. The doctors of the other six children have been receptive to the opinions of those on this forum and have agreed to do the comprehensive celiac panel (still waiting for results on them since they were seen just yesterday and today). Since 13yo has a different doc and was the first to get an appointment, I didn't realize what tests to ask for and apparently his doctor is not as experienced. I will be consulting with her on Monday to see if we can do more bloodwork or take him to one of the other doctors who have been great so far if she is not willing to do it.
Thank you everyone for supporting me through this process!
Immunoglobulin A Qn, Serum: result: 55 flag: L range: 58-358
Hemoglobin: 12.8 result: normal range: 11.5-17
So, if I am to understand this....he still needs IgG tested? especially since he is low overall on serum IgA? Or is he okay to accept the negative result for celiac because the tTg IgA is negative which is more celiac specific?