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
I just found this and it oddly gave me hope that he may have celiac disease:
Low Bone Mass and celiac disease Individuals with bone mineral density more than 2.5 standard deviations below the sexspecific peak bone mass are presumed to have osteoporosis. Low bone mass is common in subjects with newly diagnosed celiac disease. The mechanism for this effect may be due to malabsorption of vitamin D and calcium and decreased intake of calcium due to lactose intolerance. However, low bone mass may be due not only to osteoporosis but also to osteomalacia. While osteomalacia would therefore be expected to be the bone consequence of malabsorption, osteoporosis been described in celiac disease on bone biopsy. A raised alkaline phosphatase and other stigmata of osteomalacia may not always be present. It is possible that low bone mass is the only manifestation of celiac disease in a significant proportion of patients with this disorder and consequently, celiac disease may be an underdiagnosed cause of low bone mass in the general population. There are two ways in which the epidemiology of celiac disease and osteoporosis has been examined. The first is the screening of patients with osteoporosis for celiac disease. A limited number of screening studies for celiac disease among patients with low bone mass have been performed in Europe. celiac disease was found in 3.4 percent of adults with low bone mass. One Scandinavian study screened a pediatric population with low bone density and demonstrated a 5 percent prevalence of celiac disease. However, a carefully performed Canadian study in predominantly postmenopausal women with osteoporosis has not identified an increased prevalence of celiac disease. Why the difference? The early studies were predominantly based in serology alone without biopsy confirmation. It is also not clear if referral bias may have been factor. Our studies in a population-based setting have not identified an increased rate of celiac disease in over 290 patients with osteoporosis. Initial serological tests had a high rate of low-level positivity to tissue transglutaminase antibodies, however followup serological tests and biopsies only conformed celiac disease in 2/25 initially seropositive persons. This yielded an overall positive rate of only 2/290, which is close to the expected general population by screening but greater than that of the diagnosed rate.
Well the endo is now fully engaged since my sons dexa scan showed osteoporosis. It just seems that if he got osteo-p from Celiac he would have low calcium and vit D levels. He has low vit D levels but normal calcium so that has confounded things with other physicians.
Anyway, still waiting for the EGD to be scheduled.
I am praying for Celiac. For once, I would like the easy button. His sister is so clearly affected by gluten and I am betting he is too.
Just an update, all his tests for osteogenesis were negative but because he didn't have significantly low VitD and his is tall (albeit very thin), the endocrinologist didn't tihnk he could have Celiac.
My son's blood work was indeed negative but he also is on a 70% gluten-free diet because he sister is intolerant. There are days when he is gluten-free completely.
We contacted his GI to tell him we were going to put him on a gluten-free diet just to cover our bases and he wanted to see him first. He was very concerned that he has unexplained osteoporosis as a 10 year old. Honestly, it is the first time I have felt like someone was actually concerned. So he ordered an EGD and we are loading him with gluten. The GI wants to do it soon but I would like him to be eating a lot of gluten for at least 2 months before he has it.
I am praying this is celiac disease because the other reasons for osteoporosis in a child aren't all that great and Celiacs with osteo-p that go on GFD reverse their low bone density within a few years. That is a much better outcome.
I was here a few years back when I was trying to get testing for my daughter and you all were very helpful. Especially Irish Heart and a few others and I am still very grateful for their help. The GI did a gene test to rule out Celiac because of her GI issues with a negative Celiac blood panel. She does not carry the DQ2 or DQ8 genes. She was diagnosed as Non-Celiac Gluten Intolerance after we removed gluten even though the GI said there was no reason to go gluten-free. The transformation when she went gluten-free was simply amazing and the GI was shocked so she gave her that diagnosis. However, she cheats now and then because she isn't Celiac (we get to suffer with her bad moods because she feels lousy).
I have a son who has been having GI issues and frequent non-traumatic fractures (6 in arm and 1 in his heel). His Celiac blood work was negative (full panel) but his DEXA came back as 3 STD below normal which is Osteoporosis. He is low in Vit D but not critcally and all other blood work seems fine.
He is being tested for Osteogenesis Imperfecta Type V (types I-IV were ruled out by gene testing). I have a feeling this will come back negative.
If that test comes back as negative, I want the GI to do an EGD (without gene testing) because one of the clinical reasons to do an EGD when a Celiac blood panel is negative, is unexplained osteoporosis. This will be a battle since the GIs at Children's (where we have to go for insurance reasons) really rely on the blood panels (they do run a full blood panel).
My question is this: is there anyone on this forum that had a similar situation with their child? I would love to be able to give the GI some examples of kids with negative blood work but diagnosed osteoporosis and then had positive biopsy for celiac disease. Shooting for the moon, I am sure.
We had planned to make my son gluten-free in Janaury regardless but now that he has been testing negative for Osteogenesis Imperfecta, I want to get that EGD to help rule out Celiac first.
Thank you for replying. The mono was negative but her Free T4 is low. More testing. Thanks again. I don't think that swollen spleen is from gluten. I think it has something to do with whatever she is fighting. I hope.
Hi, my daughter's reactions to being glutened seem to be getting more severe. We are very strict and cautious but we travelled recently and I left her for one hour with my relatives and she got glutened. She is 13 years old and when she is exposed now, she gets horrible stabbing pain in her side near her appendix which is her mesenteric lymph nodes as evidenced by CT. This is how we know she gets glutened and then come all the other symptoms: constipation, lethargy, paleness, overall malaise. LIke she has the flu.
This time, it was bad. She had the stabbing pain and now her abdomen and back (bilateral flank pain) occurred.
She is being tested for mono (UTI and kidney infection ruled out) and we should have the results. However, I don't think it is mono. She tested positive for strep (maybe that could cause the enlarged spleen?).
Anyway, I am just wondering if anyone else has a glutening response of enlarged spleen. It seems pretty out there but thought I would ask.
Welcome to the Board and you are right, this is the place to vent.
Someone posted about the emotions that one goes through with a Celiac Diagnosis. It was well stated but I can't find it. Maybe someone else can.
You will find that you will try different products that others rave about and you may not like it. For example, we like Synder's gluten-free Pretzels. My daughter's friend asked me for a bag for her birthday because she likes them better than gluten pretzels, lol.
You are in mourning. But once you start to feel better, you will pick yourself up and find what works for you in this gluten filled world that is slowly adding gluten-free options to its repertoire.
Loves2travel is right....I wasn't a baker before my gluten-free life. And now...I am. It took awhile and I don't know why I decided to take on the challenge, but I did. On Sunday morning, I made gluten-free Cinnabon Clone and it was so good. We had gluten heads and GFers try them and the gluten folks didn't even know they were gluten-free. They were that good.
So hang in there, grieve, get your official dx (stay on gluten), get off gluten and join the world of health.
My neighbor's son was diagnosed at 18 months. Because he was so young, he doesn't "miss" things like the process foods that my 12 year old daughter miss. So that is one positive. I know your heart breaks for her but it will be OK. There is an adjustment period for this and we are watching a friend go through it right now. You will slowly figure out ways to be prepared for birthday parties, etc. And We can help.
There are lots of good posts here. Use the search bar to find topics on dealing with Pre-school snacks and playdough, for example.
Welcome to the Board and let everyone know what your questions are. We will help us much as we can.
I went completely gluten-free when my daughter had to. I have endometriosis and noticed that I no longer have pain from that. I find that quite interesting. I also have more regular bowel function (I have always had a problem with constipation) and I also seem to have more energy.
I am also a complete nutter and I am now baking like crazy so I started packing on pounds that I want my daughter to gain (failure to thrive).
I also don't buy anymore processed foods with over 10 or so ingredients in them. After about the 10th ingredient, it always seems to be a bunch of crap. Ya know?
My husband is a gluten eater with my son. However, all our dinners are gluten-free.
There are two big reasons that I would want that biopsy for a child with his history:
1) You want that scope to rule out other autoimmune disorders like Crohn's and Ulcerative Colitis. Left untreated, this can be devastating. That high tTg could be from other diseases, not just Celiac. If you had other tests, maybe you could get that positive Celiac diagnosis. Can you get a copy of the test and share it with us?
2) If he has the Celiac diagnosis, it is covered under the ADA in America and in the EU you get free gluten-free food. So when he goes to school in the US (if that is where you live), they will make gluten-free lunches for him and in college as well.
I would want to know that Celiac was causing that number. What if it isn't?