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 FREE Celiac.com 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 Celiac.com Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity
My 3 year old daughter dx in May will be starting preschool next week. Her teacher has been really great, and she wants to send a letter home to all the other parents about Celiac disease. Parents will be very involved in the classroom, and help out during parties, field trips and everyday things. We want them to be aware as well of the precautions they need to take while working in the classroom as well.
Wondering if any of you have a sample letter or anything that you have given to the other parents of the kids in the class?
My daughter was diagnosed in May, and will be starting preschool in September. She has a twin brother, who will be in the same class. He does not have celiac (as far as we know right now...blood test was neg, but we aren't convinced).
Anyway, I was very overwhelmed at first, but now feel like we have found a new normal at home. BUT adding preschool into the mix is starting to stress me out! She will be 4 in the fall, so this is her first year of preschool and she hasn't been in daycare, so she has pretty much been with me since being diagnosed. Since being diagnosed we have only had babysitters come to our house, and we went gluten free in the house, so we don't have to worry when she is with a babysitter. The thought of her being at preschool around gluten is making me super nervous!
We will be sending her own snacks, and she will have cupcakes in the freezer there for anytime they have treats.
What other precautions do we need to take????
Does she need her own playdough?
They have a sensory bucket that they have pasta in, and they do crafts with macaroni noodles. Does she need to stay away from all of that, or can she use it but make sure they make her wash her hands right after?
What do you do for school/preschool for your child.
Kudos to all of you that "get" the gene stuff and have done the research! I have read and read and read about it over the last few weeks but it is SO confusing to me! So THANK YOU for all your help!
I have been back on gluten fully for about a week and a half, maybe 2 weeks. If I haven't eating much gluten during the day, I will eat a few pieces of toast before bed just to make sure I got enough. Before that I was gluten light. My poor husband...he turned 30 this weekend,so we got a sitter and went out to dinner and stayed at a bed and breakfast. I have been making sure to get enough gluten everyday, and didn't want to risk "messing anything up" with my challenge, so we went to dinner and I had pasta and some bread. I ate about 1/4 of it, and by the time we left the restaurant, I was so bloated I looked 5 months pregnant and just felt awful. We ended up going back to our room early instead of going out and just going to bed because I was so sick.
anyway, I am wanting a second opinion and had all my tests sent to Mayo in Rochester and am waiting to hear back from them to see what they say. We live about 2 hours from Rochester, and have family there, so I am hoping it works out for me to see the Celiac specialist there. I have not sent in my genetic test results, so I will probably call tomorrow to give them those.
I agree! 2 biopsies were def. not enough! And I was so upset with the GI nurse, when I asked her if they could take more biopsies again since they would be down there anyway for my endoscopic ultrasound, and she said "No". Frustrating! What would be the harm in doing a few extra biopsies!? Although since I wasn't eating lots of gluten then, it may not have been accurate anyway.
So I have half the DQ2.5 gene....Do GI's typically recognize that as a celiac risk?
And then the other gene is DQ 7 or is it DQ 1??? Sorry still a little confused? Beachbirdie said it looks like I have DQ7 and Nora said DQ 1, or do I have both of those? Where does the half gene fit in?
sorry for all the questions and thanks for all the help!
Beachbirdie, thanks for your response! So is it the DQ alpha or DQ beta that looks like it is DQ7? Still trying to figure out the other gene. No CLUE how this stuff works!
Very interesting articles. Now that my daughter has been diagnosed, I am very curious to know what her genes are...if she has DQ2 or 8 or not.. we may get her tested just to know.
squirmingitch, yes I agree, I think the scope and blood tests were invalid, I kick myself for being gluten light before, even though it was unknowingly. But I feel like if I had been eating "normal" and not trying to lose weight I would have had accurate results.
As of right now, I am eating gluten....and not feeling very well, but I am hoping to get testing again. We'll see how long I can continue my challenge....
Also wanted to add... I do think I will go gluten free with my daughter anyway after exhausting my options with testing, but I would like to try to get a diagnosis if I DO have Celiac disease, because I feel that if I don't have that, I won't a basis to ask for other testing. I broke both of my femurs in a car accident 12 years ago, and my bones took years to heal and they did not know why. I had to have one leg re-rodded because they were worried the rod was going to break as it was bending because the bone wasn't healing around it as well as it should.
Now, I feel like maybe I need to have a bone density scan done, and maybe I wasn't absorbing nutrients (or the vitamins and calcium I was on at the time?) But I don't think I could just say "hey, I want this test done", unless I have a "reason" I guess.
I did have other tests done, kind of in backwards order though! We have since realized that the Medifast weighloss program I was doing at the beginning of this year has alot of certified gluten free foods, so I was pretty much gluten free for 10-12 weeks without really realizing it or thinking gluten had anything to do with my health issues.(and I thought I was feeling SO good because I was losing weight and exercising more...but maybe that was not the only reason!) After I lost the weight and went off the diet I would say I was probably "gluten light" because I was trying to eat a lot of fruits, veggies, salad, lean meat, etc to keep the weight off. So........ I am thinking now my testing could have been affected because of that. Anyway...on to the testing:
I was having a colonoscopy and endoscopy to look for other things that could be causing my upper abdominal pain since having my gallbladder out last december, and we had not yet had my daughter tested at that time, but I knew a little about celiac disease, so I asked the nurse if the GI would biopsy for celiac. She replied "celiac disease would not cause your abdominal pain, but he could biopsy for it I suppose"! He took 2 biopsies in the small intestine, and they were negative. (other test results from colonoscopy were GERD, Barrett's esophagus, gastritis, and espohagitis - have the physician notes somewhere but can't seem to find them at the moment, I also have the pictures from the scope somewhere)
Then after my daughter's blood test came back positive, and we were waiting on her biopsy results, I went in and had the celiac panel done, which was negative as well. Here were the results:
After colonoscopy and endoscopy I was put on omeprazole and carafate and was told to call in after 3 weeks to see if it was helping the pain. It was not, so the GI did an endoscopic ultrasound to look for bile duct stones. By this time, my daughter had been diagnosed, so I talked to the GI nurse before the procedure on the phone and asked with the new information on my daughter, if they could rebiopsy for celiac doing more than 2 biopsies since they would be in there again anyway, she called me back and said "No".
At follow up GI appt. I talked to the Dr. about my daughter being diagnosed and now all the sudden he was like "OH...well let's do the gene test then". (results posted above). He also ran other blood tests:
A bunch of other levels were run, and the nurse called and said "everything looks fine, everything is negative". But when I got the copy of the results there were 2 flagged as high.
Globulin 3.4 (normal range 2.7-3.2)
Chloride 110 (normal range 98-107)
They are not super high (I don't think?), but I was frustrated that the nurse just said "everything is negative". I don't know what those elevated numbers mean...but still they are above normal range, and she didn't even bring it up.
Sorry for the long post! Any input on any of these test results would be greatly appreciated!
My GI ordered the gene test for Celiac, and I requested a copy, but I have no idea how to read it, can anyone help?
DQ Alpha 1 01,05
DQ Beta 1 03,5:01
Then it says under Interpretation: see comments. But there are no comments. It just says gene pairs not present. My 3 yr old daughter was diagnosed with celiac through blood and biopsy. And I have a ton of symptoms... diarreah, severe upper abdominal stomach pains, nausea, low iron, bone and joint pain, hair loss, bloating, insomnia....and the list goes on. (I finally realized that this stuff is NOT normal, and I need to figure out what is causing it!)
So, do these test results mean I could not have Celiac disease?
Also, would that mean that my daughter got the genes for it from my husband and he should be blood tested as well even if he has no symptoms?
Hi, I am wondering if anyone has ever seen Dr. Kinney in Minnesota? He is who I am seeing, and I am wondering if he is very educated about celiac disease. I was having a biopsy done for other reasons, and I asked them to biopsy for Celiac as well. The nurse said fine, but that celiac disease wouldn't cause my abdominal pain I am having anyway.
They took 2 biopsies from my small intestine and they were negative.
Meanwhile, my 3 year old daughter was blood tested and biopsied, both of which were positive.
My symptoms include diarrhea, bloating, nausea (especially in the morning), severe upper abdominal pain, iron deficiency anemia, hair loss, extreme fatique, axiety/depression, joint pain, bone pain, tingling hands and feet, infertility, irregular periods, chest pain, racing heart, late puberty, GERD and Barrett's esophagus, bruising easily.
It seems with my symptoms, that they should at least look at the possibility that the damage was missed in the biopsy... right?
They don't seem to think that. They said the biopsies were negative, you don't have it.
Has anyone else seen this doc or been diagnosed by him?
I need some opinions on what to do in the situation I am in, and also wondering how common it is to get a false negative on a biopsy and blood test?
A little background info... I will try to keep it as brief as I can.
I had my gallbladder out last december, after 4 years of uncomfortable pain in my upper middle abdomen. After having my gallbladder out over the last 6 months I have still had pain in the same area, only now it is WAY worse! Severe abdominal pain that at times leaves me unable to even walk. After the 2nd ER visit in a couple of months due to this pain, I was referred to a GI doctor.
In the meantime, my 3 year old daughter, has been having severe constipation, along with other symptoms I now know are related to celiac disease, and she was also referred to a pediatric GI. They tested her thyroid, and did the blood test for celiac.
Before we got her results back from anything, I had an endoscopy and colonoscopy done upon my GI docs orders. We had talked nothing of celiac disease, but when I was in the prep room I asked if they would biopsy me for celiac. The nurse said celiac disease would NOT cause my abdominal pain (?), but they would do the biopsy. (nevermind that I have diarreah all the time, low iron, and other issues too).
My biopsy came back negative for celiac, and the endoscopy showed inflammation in my esophagus and stomach and bile pooling in my stomach, and I was diagnosed with GERD. The pathology report showed Barrett's esophagus.
I did ask how many biopsies they took in the small intestine, and I was told 2.
Shorty after that we got my 3 year olds blood test back, which was positive for celiac. We then had her endoscopy done, which also came back positive for celiac. Her symptoms are severe constipation and compacted stool, low iron since about 1 year of age, distended belly, short stature, colicky as a baby, and irritable as a toddler.
As soon as we got her biopsy result, I took my other 3 kids in to have the celiac panel done, as well as myself, even though I have had a negative biopsy.
I have not gotten the kids results back yet, but mine came back and are negative. After finding out my daughter does have it, I thought for sure my blood test would come back positive with all the symptoms I have, and I though that the biopsy was probably a false negative.
What would be the chance though that both would come out false negative?????
Here are some of my main symptoms...
diarrhea and constipation (I seem to go from one to the other, never in between)
low iron for years
infertility (in later years, no trouble with 1st 2 kids, but had a hard time getting pregnant trying for 3rd, was put on clomid, and got twins!)
lots of stomach aches and nausea
upper abdominal pains
easily bruising (as of recently)
just overall "yucky" feeling
So, as I said, I was surprised mine came back negative. Knowing now that my daughter has it, and with my symptoms, I really thought this was going to explain all of my issues!
I know I could just go gluten free and see if it helps, but I also feel like I would like to have a diagnosis to know for sure since it is gluten free for life, and I don't think I want to go off and then eventually go back on to get a diagnosis.
What would you do from here? Get another blood test in a few months, do the gene testing????
In case anyone is interested here were my blood test results:
IgA 4 (normal range 0-19)
IgG 2 (normal range 0-19)
tTG <2 (normal range 0-3)
Interesting question.... I am curious to know what others have experienced too!
My husband and I were just discussing this issue tonight! Our 3 1/2 year old daughter was just diagnosed with celiac. She does not have a speech delay, but her twin brother does, and is in speech therapy. He does not have the digestive issues she has had, but they both have had low iron since about 1 year of age. We have 2 other kids as well and they all went in yesterday to get their celiac panel done.
We are curious to see what his blood results show, and if he does have it, if his speech delay and celiac could be connected.
1974girl, I am hanging in there ...while it is a relief to have answers as to why my little girl is so miserable, it was also really hard for me to hear that the biopsy confirmed Celiacs, and honestly, I was devastated. Even though we knew chances were very high she had it after getting the blood test results, and had already gone gluten free for her as soon as the biopsy was done, it didn't really hit me until the doctor called and said, yes it is Celiac disease. Actually I still don't think it has really hit me. I have cried a lot too. I feel pretty much how you described feeling. But I know, like you, it will become a part of our life and we will still be able to have our own versions of the "comfort foods" at holidays and such
Thank you for the link for the gluten free package! I called the number and left a message... that will be so helpful!
Thanks for checking in It has been so helpful to get input from people who know what we are going through, and have been there themselves!
Yes, it is definitely a relief to have answers, but it was also hard to hear the results even though I was not surprised.
The other 3 kids got their blood tests today and I had mine yesterday. Just my hubby left to do the test. I will be happy when we get the results back and I don't have to make gluten food for the other 3 kids and gluten free for my daughter. It's been hard on her with them eating "regular" food, and her having "special" food, especially between her and her twin. They do everything together and everything always needs to be equal!
I agree, I will be curious about her thyroid levels after she has been gluten-free for a while....