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researchmomma last won the day on February 14 2012

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  1. 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.

  2. Cyclinglady, I have to agree with you completely.


    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.


    Thank you!

  3. 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 will keep you posted.

  4. 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.  :rolleyes: 


    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 in advance for your help.





  5. I had an enlarged spleen only once (that I know of) and that was when I developed ITP (thrombocytopenia). If she has that, her blood and platelet counts will be low because the spleen is destroying platelets... it's a rare disorder and unlikely but if she is at anemic it could be something to give a quick look at.

    I hope she feels better soon... Poor kid.

    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.

  6. 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.


  7. 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.

    We will be here, so ask away.

  8. 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.

  9. 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.

  10. 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?

  11. Perhaps you could strike a bargain with your doctor. Have her eat gluten free for one week, continuing with her symptom and food diary, and see if there is any change. If she improves, the bargain would be that the the doctor would order the biopsy (you would have her resume eating gluten untill this could be scheduled, and one week off gluten should not affect the results). Of course, there is always the possibility nothing would change in one week but it is worth a trial and there is nothing to lose..

    Then you wuld put her back on gluten free, permanently if positive and for a good three month trial if negative to see how she responds. She may be non-celiac gluten intolerant or she may have one of the more uncommon celiac genes.

    Best wishes in taking care of your daughter. :)

    I wish I had thought to do that!

  12. I could have written your post except our issue was constipation. My daughter was negative on blood and does not have the genes so they wouldn't biopsy.

    We decided to take her off gluten for 3 months and see if helped. Well guess what? It did and it has been fabulous.

    Now her doctor has diagnosed her as Non Celiac Gluten Intolerant. I went in with a list of symptoms and crossed off the ones that had resolved and the doctor was very pleased.

    Those symptoms you mention are not normal for a child so it certainly can't hurt you to try gluten-free.

    You know what my favorite change is? Her moods. She was in pain for so long from gluten that she was just miserable and not really fun to be around. That is no longer the case. I wish I had tried gluten-free earlier! She is still zero percentile for weight but we are hoping that changes soon.

    I say give it a try.

  13. I am so glad you enjoyed Prague. I just returned from living there for two years. I laughed when I read "no smiles, that wouldn't be Czech". Boy are you right about that.

    We weren't gluten free in Prague, although I wish my daughter had been diagnosed there since they are very familiar with Celiac disease and gluten intolerance. It would have been so much easier than dealing with the ignorant US docs.

    I will be back in April and I am happy to see all the gluten free options.

    Thank you so much!

  14. I just wanted to jump in here and tell you my quick story. I say avoid the genetic testing until you can get a biopsy. If your child doesn't have the genes, they won't want to do the biopsy.

    My daughter has all the symptoms of Celiac including steatorrhea and failure to thrive but our Celiac Specialist would not do a biopsy because her blood work was negative. So she ordered a gene test and said if she doesn't have the genes then she doesn't have Celiac.

    She later said that isn't true but now it is too late. We put her on a gluten-free diet and one by one her symptoms are going away. In fact, her hair seems thicker, her dark circles have gone away and her moodiness and crankiness have improved too.

    She is diagnosed as Non Celiac Gluten Sensitive. It sure would have been nice to have that biopsy to rule it out and see if there was anything else causing her issues.

    BTW, your English is GREAT!

    Welcome to the Boards and I hope you get some answers soon.

  15. If you saw me you would never think I was sick with anything I'm 5ft 4in and weigh 121 pounds with 22% body fat. I'm very fit and healthy. All of my vitamin levels are in the normal range and I feel great. I'm completely at a loss for words with the whole situations. Im very strict with the diet. We have a completely gluten free home and lifestyle, both of my children also have celiacs so we are extra careful with it.

    I know in my heart that now wasn't the right time but I just want to throw a temper tantrum about it. I just don't understand why we had to try so hard to get pregnant for it to happen so easily when it did just to lose the baby in the end. I really don't see the whole point in that. I know god has a plan but is it to much to ask for him to send me a text to just clue me in a little.

    Thanks for giving me a place to vent my hurt and frustrations.


    I have had five miscarriages due to endometriosis and the pain was all consuming.

    Loves2travel has it right in my opinion....well meaning people say the dumbest things. Just ignore them and heal.

    I finally conceived my son and I will tell you that I can't imagine having a different child. I know that is just talk to make myself feel better but I really can't picture it.

    I am very sorry you are going through this. Big Hugs. Be good to yourself.

  16. Hi,

    I am under the suspicion my daughter might have celiac (or some other type of gut issue) I have a pediatrician appointment in 5 weeks time, but thought that hoping on here might help me a little in the mean time.

    My almost 4 year old daughter has suffered from gut issues with an intollerance to cows milk noticed at 12months after I finished breastfeeding. The symptoms i noticed were irritability and consipation. once I put her onto goats milk, the irritability and sever constipation improved. Also for the first 12months she suffered a lot of colds (Stuffy, runny nose)while I breastfed her (I drank a lot of milk at the time).

    By her growth charts, she was on the 50th percentile from birth until approx 6 months (when solids were starting to be introduced) and from then, she has slowly from 6 months of age to when she was around 2 - 3 years, dropped below the 3rd percentile for both height and weight. at 2 years she weighted 10 kilograms (approx 22 pounds)and 80cm (i think this is about 34 inches?) at 3 she weight around 11 kg (24pounds) and 89cm (35 inches?)

    SHe gets a lot of headaches and still sufferes from constipation occassionally. SOmetimes her stools do float in the toilet and they look hard. She has had the blood tests last year for Celiac and came back fine so i had left the situation until the last few months she has been vomitting out of the blue, and no one else is sick. OFten complains of a headache before the vommitting. She still has a bloated looking stomach, and I thougth that by around this age, that might have gone down? (thinking it was a baby thing?)

    There was also a period of time she was waking up in the night with sore legs/knees the were making her cry.

    I had been told by the doctor if she has gone 2 days without a bowel movement, to give her some orange juice (this does help) I have been very strict with no cows milk in her diet since a large amount of icecream gave her diarreah.

    Any help with this situation would be appreciated. NOt sure if i am on the wrong track of thought here, but just looking at some alternatives until the pediatrician appointment .



    Hi MumOf2, hang in there. Just know that many times the blood tests come out negative in children. My neighbor's 18 month was negative but his biopsy was very positive. As the other poster stated, keep her on gluten diet.

    Funny, I could have written your post regarding the breastfeeding to milk. It caused constipation in my daughter and horrible moods. She had colds and even pneumonia a few times before 2. She is constipation free now after 2 months gluten-free.

    You said you were seeing a pediatrician in 5 weeks. Is this person a GI? Really push for a endoscopy and biopsy regardless of the blood work.

    Welcome to the Boards. It is a great resource.

  17. I use the Kraft cheese packet as well, but I make mine with Quinoa pasta instead of the rice pasta. I've tried every brand of rice pasta I can find, and I just don't like it. So yes, I feel weird buying regular Kraft mac and cheese and then wasting food by throwing away the pasta, but I figure I only do this about once or twice a month, so it's my treat. Ok, now I really want some mac and cheese for breakfast :-)

    We have tried every rice noodle as well. We finally landed on Schaar corn pasta and it holds up well in the thermos (I make pesto chicken pasta for my daughter with these). I also buy the tincy tiny ones to make "chicken and star soup". It is called Anneli or something like that.

    We find Schaar to be the best but the brown rice Tinkyada pasta with the cheese packet is really good. That is the only thing I like rice pasta in.

    Seriously try the Kraft Packet with your favorite gluten-free pasta. My gluten eating son asks for it now. The other noodles seem mushy to him now, lol

    Edited to add that for the best results whisk the cheese sauce and other ingredients first and then add the pasta back in.